No matter how old you are, no matter whether you’re single or married with kids, or no matter what your economic status is, every human being depends on others to some extent.  People may not like to admit it, but nobody is really ever totally independent.  Obviously, there’s a broad range of dependency.  Everyone likes to be viewed as being as independent as possible.  The notion of independence comes with a certain level of clout.  When people accomplish a task independently, it’s viewed as a positive thing.   For many people with disabilities, being able to do certain everyday things (that others often take for granted) independently is often a huge accomplishment.

As I’ve shared in past entries, I need assistance with all of my basic needs.  Someone has to help me roll out of bed in the morning, use the restroom multiple times throughout the day, get showered and dressed, prepare and eat all of my meals, and put me to bed at night.  To most people, that sounds the complete opposite of the definition of independent.  Yet, most people who know me say I’m a pretty independent person.  Yes, I need physical assistance with basic needs, but I’m able to do a lot of tasks despite my limitations.

I learned a whole new level of independence last summer when I switched to Self-Directed Personal Care (SDPC) through IRIS.  I’ve been hiring and scheduling my own staff for over eight months now, and it has been quite a learning experience to say the least.  Previously, I had always had home care agencies that would hire and schedule all of the workers.  As I explained in a previous entry, the last agency I had was a complete nightmare.  I was leery about taking on the responsibility, but I really didn’t have a choice. 

To find workers, I posted ads on sites such as Facebook and indeed.com.  People would apply via email, and then because I’m non-verbal my mom would call them and interview/tell them about me.  If the person sounded legit and interested, I’d email them the packet of forms to fill out (I downloaded the forms and filled out as much as I could).  Once the person completed the paperwork, they’d email me and we’d set up a time for them to drop off the paperwork at my apartment.  I made sure everything was filled out correctly, and then I’d email my IRIS consultant to setup a time for her to pick up the packet.  As I mentioned in my last entry, it took quite awhile for some of the paperwork to process, so I had to stay at my parents for close to a month until enough people were approved.

I created a Facebook group for my staff where I post and organize everything.  I currently have 12 approved staff besides my parents. I create a monthly schedule based on the availability the staff gives me.  Eight months in, and I’ve already had some pretty interesting things happen.  When I first started, I had three or four people turn in paperwork and get approved to work, but then decide they don’t want the job.  That’s incredibly frustrating!  I had a person who had multiple shifts give less than a four hour notice of quitting.

On multiple occasions, people have called in on short notice (including in the middle of the night) or not shown up at all.  When that happens, I message everyone in my group right away to see if anyone can help me.  Unfortunately, not many people are willing to pick up shifts on short notice.  I haven’t found a good solution to this.   Fortunately, I’ve been blessed with great parents who have come to my rescue many times.  I feel absolutely horrible that I have to depend on them. Since I’ve switched to SDPC, they don’t feel comfortable traveling out-of-state because they fear I’ll need something.  That’s not right, but I don’t know how to fix it. 

Call-in and no shows aren’t the only issues I’ve had.  I debated whether or not to share this story, but I think it shows the reality of personal care for people.  One morning in December, I had a new girl scheduled to get me up.  She had read my care instructions (I have step-by-step instructions typed out for each shift) and she had observed one shift.  The first part of the shift went really well.  The problem came when I was transferring off of the toilet into my chair. When I sat down, I wasn’t far enough on my seat and I slid onto the tile floor.  Luckily, I wasn’t hurt, but the girl couldn’t get me off the floor.  She was freaking out and didn’t know what to do.  I gestured her to grab my cell phone off of my chair and got her call my dad.  My dad said he’d come help, but it’d be close to an hour before got there (my parents live 45 minutes away).  After he hangs up, the girl starts crying and runs out of my apartment leaving me lay on the bathroom floor!  My dad knew something was really wrong when he rang the doorbell and nobody answered (thankfully he has a key).  I’m just thankful she called my dad before running out.  I wasn’t even upset that I was on the floor.   Accidents happen.  It was the fact that she left me alone on the floor that upset me.  Admittedly, laying on the floor for 45 minutes waiting for my dad, I felt pretty dependent and useless.  Needless to say, the girl never came back, and now every new staff I have has to at least one transfer with me when someone is watching before doing it on their own.

With SDPC, I also have to make all of my staff have their hours in and approve them.  When you have nearly 50 hours of care per week and 14 staff, it’s quite a chore.  I have to make sure every shift in the two-week period is entered correctly and is coded right.  If something isn’t correct, I have to contact the staff and have them re-enter it.  When people have issues logging into the portal to submit their hours, I have to help them solve the problem as well.

With all that said, being on SDPC has made as independent as I possibly can be.  As stressful as it is, I’m much happier and safer this way.  While I know I likely will have to go back to having an agency at some point in my life, this is the best choice for me right now.

I realize I’ll always be more dependent on others than most people are, but I’ve accepted that.  Given the severity of my physical limitations, I feel like I do pretty well.   We all need help to some extent, but, like everyone else, I will always strive to be as independent 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.