New EasyStand Blog post: PCA Upheaval

In my new EasyStand Blog post I break down the unprecedented amount of PCA Upheaval that I have succumbed over the past few months.

Mr. Dean’s Wild Ride

One of the things that my friends over at Love Like This Life do to give readers a great insight into their married disability lifestyle is that they seem to write a lot of their blog posts in near running diary fashion. Over the years my style has been to write more topically and then layer in insight into my disability lifestyle in that way. But at the beginning of February I had about a two week stretch where all kinds of crazy things happened to me that can only come to light in my SCI lifestyle. So I’m breaking from my usual mode and going diary style to break down Mr. Dean’s wild ride.

It all started on a Sunday that I decided to go into work despite an impending bad snow storm. I was doing a document review project for a downtown Minneapolis law firm and we were on a strict Monday deadline for one portion of the project, so all hands were on deck. Since I was authorized to work unlimited hours (i.e. overtime) for most of the project, given the deadline, and since the duration of the project was winding down I didn’t care if that meant only having one day off in over two weeks because I wanted to soak up as many work hours as I could before the job ended. Plus I wanted to prove that I was willing to go the extra mile as a team player to set myself up for future work there.

Anyway, just getting to the work space was a bit of an adventure on the weekends because the skyways have limited hours that they are open. The parking ramp that I parked in, one of the best deals around at $6.50 a day ($5 on the weekends), was up to six blocks away from the building that I worked in. In general, to get to work I had to roll approximately a mile (by the time you factor in all the twists and turns) through about five buildings and six skyways. One of the buildings is the downtown Macy’s. On Saturdays both the skyways connected to Macy’s and the building I work in don’t open until 10 AM. On Sundays they don’t open until noon. I could work around the 10 AM skyway openings on Saturdays because I never wanted to get to work much earlier than that on the weekend anyway. But on Sundays it caused an issue because I didn’t want to get to work that late. Of the three weekends that I worked that point was moot because I never worked on Sundays anyway. But as I mentioned, I came in on that Sunday as well given the circumstances.

With the skyways being closed until noon, that meant that in order for me to get into my building around 10 like I had hoped I would need to go to the street level at some point during my commute from van to work site. With the Macy’s skyway being closed until noon that meant hitting the streets for three to four blocks, which I wasn’t crazy about under any circumstances in 20-something degree weather, let alone during a snowstorm. The parking lot directly across the street from my work building was $18 per day, an expense that I had incurred a few times and was trying to avoid again to save money given the short term nature of the project. (Spoiler alert: I should have just swallowed the 18 bones and parked there.)

So what I decided to do was park in a ramp that was two blocks down the street. During the week it had an $11 a day deal so I figured I was saving at least $7 that way. But what I forgot was that it was an in by 9 AM deal and I showed up after 9. When I saw that it might cost me up to $14 for the day I was just about to back out until a car pulled in behind me and I was stuck. (As it turns out it was only $4 on the weekends, but more on that later.) As I got out of my van I noticed that there was nobody in the ticket pay booth, which meant having to pay with an automated machine. It wasn’t going to be tough to put my parking ticket or credit card in the machine but it was going to be near impossible to pull my credit card back out again. Therefore, my options were to ask for help from someone in the office or pull up to the machine, drop my ramp, get out to pay, and get back in as soon as I could. And if someone was waiting to pay behind me they could just wait and deal with it. At that point all I could do was shrug my shoulders and deal with it later.

As I rolled down the sidewalk the snow was coming down at a decent clip but the ground clearance was still fine. I had never gotten into my building from the ground floor so that was a new experience. It was highly concerning watching the snow come down like buckets while I worked because it meant that my path back to my van was going to be that much more challenging. When the snow comes down as hard as it was the snow removal priority is always to clear the streets first, then plow/shovel the sidewalks maybe, and more often then not the curb cutouts at crosswalks get forgotten in the mix. It can be almost impossible to bust through snow piled up on crosswalks with a wheelchair. At numerous points during my work shift I thought, “You should just leave now, don’t worry about the extra work.” But at a certain point I figured it didn’t matter how long I was there because it was going to be just as bad taking the sidewalks, if I had to, no matter when I left. In for a penny in for a pound.

The strategy that I was leaning on heavily in parking where I did was that there were skyways that connected my building to the building closest to that parking ramp. I used to work in that building so I was very familiar with the surroundings. As I left work I took the skyways back to my parking ramp as planned. But much to my chagrin the skyway that I needed to get closest to my parking spot was closed. Thus I had no choice but to hit the sidewalks.

The skyway to the building that was kiddie corner to the block my parking ramp was on was open so I went into that building and down to the street level there. That only meant crossing the street twice so that was good news. Most of the sidewalk that led to the first crosswalk was unplowed so it was a little hairy rolling down the sidewalk. In those circumstance the bolt that is attached to the bottom of my chair that locks into the locking mechanism on the floor of my van for safe driving (i.e. the EZ-Lock) can be a disservice because it sticks out like a rudder and can get caught on stuff underneath me. It’s kind of funny to look back when I roll through fresh snow because you see two tire tracks and an extra skinny track in between, like an animal with a tail.

But as I approached the first curb cutout my worst fears were realized: it was clogged up with snow. I could have possibly gone full blast and tried to bust through the pile but the chance of getting stuck with not too many people around to help was too risky. Instead I took a left and went down the sidewalk to the end of the next block to see if I could cross the street more easily there and then double back on the other side. The clearest curb cutout put me right in the street that only buses and utility vehicles can use and I was able to cross the street that way. But once I got on the other side I realized that there were unexpected obstacles on that sidewalk due to construction. So I had to go back the way I came. In doing so I played chicken with a city bus—and won—before I got back up on the sidewalk again.

As I went back down towards the clogged up cub cutout I encountered a guy with a small utility vehicle who was plowing snow in the street. I asked if he could clear the curb cutout for me and he agreed. As I was sitting there waiting I quickly assessed the rest of my path back to my van. Both of the curb cutouts directly across the street from me and then kiddie corner from me across the street from that were even more jacked up, so I figured my best path was to cross the street in front of me, which consisted of one traffic lane and two lightrail tracks, stay on the lightrail track and cross the next street, then just go straight down street like a car to the driveway of my parking ramp. In that kind of snow mess there are no rules!

So once that guy cleared my path I began to execute that plan, but it didn’t go as smoothly as I hoped when I had to wait in the middle of the lightrail track for the traffic light to change, which was disconcerting to say the least. Moreover, the part of the track that I was sitting and waiting on was clear from snow but right in front of me was about four feet of a few inches of built up snow. So if I couldn’t blast through that then I would get stuck on the lightrail track indefinitely. When the light turned green I went full speed, blasted through the snow, hit the street, and didn’t stop my forward momentum until I made it safely to my van.

When I got to the parking ramp I knocked on the office window and the guy inside seemed annoyed by it. When he came to the door I asked him if he could help me pay the machine with my credit card as I pulled out. He very gruffly said the machine didn’t take credit cards and was cash only, and then stood there with this “Is there anything else, you’re annoying me” unhelpful attitude. I didn’t have any cash so suddenly I was in quite the inexplicable quandary. As I got back into my van and looked back at the nightmarish path that I had just taken to get safely where I was the thought of reversing course to go through all that crap again to find an ATM was too inconceivable. I had never felt so vulnerable in my life; it was sobering and awful.

So I called my friend Adam, who lives relatively nearby where I was and who as helped me out in tough spots before, but unfortunately he was just passing Hudson, WI on his way back to the cities from Eau Claire. But he called an MBA classmate/buddy of his, who lived in downtown Minneapolis, to see if he could help me out. Thankfully, his friend was home and came to my location to rescue me. I told him I’d probably need to borrow $20 to pay what I was expecting to be a $14 bill, but as I mentioned I was pleasantly surprised to discover that all I owed was $4. I thanked him, vowed to pay him back via my friend Adam, and felt overwhelmingly relieved to once again be in control of my surroundings in my van. And free from that whole snowy parking ramp mess. When I finally got home all I could do was thank God for my safe arrival.

MEANWHILE, the snow storm was causing issues with my PCA situation for that night as well. My PCA was supposed to be at my place by 5:30 for my evening personal care routine but was going to be late. Normally, she came from North Minneapolis but was at a sister’s birthday party in Edina instead. Complicating matters was that she rode the bus and lightrail to get to me and bus schedules were delayed due to the snow. She was told that the plows were running from north to south, the buses weren’t going to start running where she was until 6-6:30, and that she wouldn’t get to my place until after 8. Given the circumstances I had no choice but to wait.

But then I got a call from her around 7 indicating that things had gotten more complicated. By the time we would get wrapped up she wouldn’t have a way to get home because the buses stopped running at midnight. I reluctantly offered to give her a ride but she didn’t want to put me out like that. So she had called the PCA company to see if they would provide a cab for her to get home. They said that they would call one for her but that it would come out of her paycheck. PCAs are responsible for their own transportation to and from client’s homes, and that’s how it should be, but given the special circumstances of the snow and delays therein I think they should have ponied up for a cab ride home for her. But that wasn’t to be the case that night.

Anyway, that call to the company ended up getting pretty heated. My PCA felt the same way that I did but there was a history of her calling for paid cab rides that were not appropriate under the circumstances so they really dug in their heels because of that. At a certain point my PCA’s mom was on the phone with the office person chewing her out and it just devolved from there. I’m not sure why she hadn’t gotten on the bus at that point so that was frustrating that things were now even further delayed. So next thing I know her mom was on the phone with me venting about what had gone down and vowed to go into the office the next morning and talk to the owner about the cab situation. Ultimately, she was going to just give my PCA a ride here and pick her up again after.

Flash forward another hour and I get a call from my PCA that the roads were really bad in downtown Minneapolis and that not only did her mom just want to turn around and go back home but she wasn’t going to venture back out to pick her up again. So we were back to the issue of how would she get home again. At that point I decided to just scrap the whole thing because it was just getting too late anyway, at almost 9 PM. My evening toilet/shower routine is every other night, and I’ve only gone three days in between a handful of times in over 16 years, so it was a calculated risk as far as that went, but I felt like we really didn’t have a choice at that point. I also told my PCA to chalk this up to stress over bad circumstances due to the weather, to let cooler heads prevail, and to have her mom reconsider going to the office full of piss and vinegar the next day, because the most likely result was my PCA—who was really great—either getting fired or quitting.

The next day at work I get a call from the owner of the company wanting to discuss the previous night’s events. They felt that the staff member had been verbally abused during the aforementioned phone call about the cab and just wanted my take in general to be sure that I wasn’t being similarly mistreated. I said it wasn’t the case and that the previous night should be chalked up to stress from inexplicable circumstances due to the weather. Regardless, she said that due to the previous night’s exchange and other issues I won’t mention that they were going to put my PCA on suspension for three months. About 20 minutes later I got another call saying that the call with my PCA did not go over well, things got heated again, and that my PCA quit on the spot. It wasn’t unexpected but unfortunate for me because I was losing a great PCA, who was really good at what I needed help with, and we had lots of fun to boot.

Meanwhile, she was supposed to be coming by that night to help me out with my evening routine. So on short notice they sent a fill-in who had no experience with the most invasive part of that routine, so that was frustrating. The PCA that quit was also coming in every morning so all of a sudden my very stable PCA situation was completely in flux.

In the short term, they were going to send a fill-in the next morning, a girl who had been in on a weekend and was maybe going to be my new every other weekend PCA. After her first weekend I wasn’t sure if she was going to work out because her common sense was for crap. For example, it took her 10 minutes just to figure out how to open the lock box that my apartment key is hidden in so that PCAs could get in, with me telling her how to do it step by step even. You punch in a four digit code and open the faceplate to reveal the hidden key—not exactly rocket science. But a lot of PCAs struggle on their first weekend so I decided to give her one more weekend before deciding to let her go.

Anyway, at 6:13 AM the next morning she calls me to say she was on her way—she was already 13 minutes late by then. At 6:24 she called again to say that her car stopped, was waiting for a ride, but was on the way as soon as could. Then I fell asleep until 7:20. Called her twice with no answer. I called the company to try her, but to no avail, and they sent an on-call fill-in. By the time the backup fill-in got to my place I would normally be leaving for work, so I was an hour late. Neither I or the company heard from the other PCA about what happened. So I told them I’m done with her.

The fill-in that came that Monday night came again on Wednesday and Friday nights. I liked her and wanted to hire her. But she had another client every Sunday and Thursday night, and with me doing my routine every other night—and changing that schedule up every now and again—it wasn’t going to work out.

The fill-in that came those Wednesday, Thursday, and Friday mornings, as well as the weekend mornings, has since become my permanent Monday-Friday morning PCA. The fill-in that they sent that Sunday night has since been coming in almost every other evening since. Apparently, she’s only scheduled to come in through March 17, which I think is part of a trial period, so I don’t know what is going after that. But she is good at her job and I hope that things continue on. So after a week of total PCA craziness—being forced to work with new people is frustrating for me—it was nice to finally get back to a point of PCA stability again.

On the Friday of the week that my PCA quit I was informed that my document review project was ending. My cap of 48 work hours was up by 2 that afternoon so I sent my supervisor and FYI email about that. About an hour later she scheduled a meeting with the team and broke the news. It was both surprising but not entirely unexpected. About a week and half before that we were informed that as the next phase of the project began the team was getting reduced from 16 to 8, and I made the cut. So as much as I hoped, and was even given the impression that the project would continue for a few more weeks after we passed that Monday document production deadline, I felt like I was on gravy time. I’m told that I did good work, so I should be on the short list for upcoming projects.

All that being said, it was quite the wild ride.

New EasyStand Blog post: The Hidden Responsibilities of the SCI Lifestyle

In my new EasyStand Blog post I discuss some of the Hidden Responsibilities of the SCI Lifestyle.

New EasyStand Blog Post: Dealing With Set in Their Ways PCAs

My new EasyStand Blog post dishes on dealing with PCAs who are too set in their ways. Please check out Dealing With Set in Their Ways PCAs.

New EasyStand Blog Guest Post: Fitting Personal Cares in Around the Holidays

My new monthly guest post for the EasyStand Blog covers the challenge of coordinating my personal care schedule around the holidays. It’s one of those hidden things that I, along with many other people with disabilities have to coordinate. Please give it a read: Fitting Personal Cares in Around the Holidays.

Belated Thanks to Kevin Sullivan, and R.I.P.

When I started law school in 2003 I moved away from home for the first time, going from Eau Claire, WI, a city of about 68,000, to Minneapolis, MN, one of the largest urban metropolises in the country. It also meant that I moved out of my parent’s house—a very safe, comfortable, accessible, and above all, insulated environment—for the very first time as well. That said, when I moved to Minneapolis I faced three major hurdles to striking out on my own: 1) finding fully accessible housing (with indoor parking) that would allow me to live my lifestyle safely and comfortably, 2) figuring out who would help me out with my personal cares in the morning, and be readily available if I needed extra help at any point during the rest of the day as well, and 3) how I would get gas for my van since I couldn’t fill my tank on my own and my parents, sister, friends, etc. who helped me around Eau Claire were 90 minutes away.

On Thursday August 21, 2003—the very same day that I started law school classes (a nasty bout of cellulitis and a blood clot on my lower right leg had me hospitalized for five days and delayed my move to Minneapolis by three days) I moved into the rehab residence at the Courage Center in Golden Valley, MN on a temporary basis while waiting hurry-up-and-wait style for my name to work it’s way up to the top of the waiting lists of about a dozen buildings that had wheelchair  accessible apartments. Unfortunately, they were in high demand with slow turnover. At the time having to live at Courage felt like a step backwards because I went from a mostly private apartment-like setting to a quasi-hospital rehab setting that I graduated from seven years prior. But it was a good transitional environment with nursing and attendant care staff on hand 24 hours a day. Within a week of moving in I drove around the area surrounding Courage on a night off from classes to familiarize myself with my new neighborhood and discovered a mom and pop style full service gas station called the Robbinsdale Oil Company, so that was a huge relief. I still use it as my primary gas station too.

Early that November my name finally got to the top of the waiting list at an apartment building with a new unit opening and I got a move in date of November 14. While I was just starting to try to figure out the personal care attendant (PCA) hurdle, which had to be set up by the time I moved in of course, my good friend Kurt, who was the Courage Center residence intake coordinator at the time, suggested that I go with In Home Personal Care. He told me that it was a high quality PCA company that was founded  by a quadriplegic named Kevin Sullivan. As soon as he said the word “quadriplegic” I didn’t need to hear any more: In Home it was. I figured that any PCA company founded by a fellow quad a) had instant credibility and b) would be specifically tailored to suit all of my personal care needs, because with us having similar disabilities it was practically guaranteed that any personal cares/daily tasks that he needed help with I did too. In fact, when you get put on hold when you call the company part of the message loop featured his voice in very Hair Club For Men ad-like fashion essentially saying “…and I’m also a client…” Within days I had made contact and was promptly brought into the fold. And I’ve been a client of the company ever since.

That is why I was saddened to hear of the passing of Kevin in June.* I still don’t know any details about the cause of his death other than the fact that he was found dead in his van in the parking lot of a grocery store. That notion alone made me cringe because the being stuck in my van alone when I really need help in an emergency scenario has run through my mind dozens of times in my fifteen years of being a quad. It’s in those moments that not having full finger function to call 911 really fast, having your wheelchair stuck in the vehicle’s safety lockdown, or to not be able to get the van’s ramp down quickly enough really seem to enhance the difficulties of living with such a disability.

Unfortunately, I never got a chance to meet Kevin either. The closest that I ever got was that I almost talked to him once. I was having nagging difficulties with a few personal care issues and asked for his number from someone in the office so that I could seek advice from someone who had more quad life experience than I did. It never got beyond an exchange of voicemails though. But he seemed like a good guy. I know that he was generous with his clients, giving us Christmas gift packages almost every year, a signed card with a $10 Target gift card inside for birthdays, threw client appreciation summer picnic parties, and got tickets for accessible seats at Minnesota Twins games that clients could use free of charge.

But the company that he founded is great and it has been, and continues to be tailor made to my personal care assistance requirements, and is thus invaluable to letting me live as independently as possible every day. The office is staffed with really great people who are as friendly and professional as they are helpful, and they strive to ensure that my PCA needs are covered as well as possible. Whether I need a PCA for a new permanent shift, a temporary fill-in, an on call visit, or a replacement in a pinch when someone can’t make it to my place in the morning the office has always staffed me adequately and efficiently. And that is guided by Kevin’s vision for the company.

But the key component is that In Home puts the ultimate PCA personnel power into my hands, which is the way that it should be in my opinion. When I lived at home in Eau Claire the only PCA agency in town was a home healthcare unit that was run through a local a hospital and they did all of the personnel scheduling, so most mornings I didn’t know which home health aide, good or bad, was coming to help me in the morning until they arrived, and that was very frustrating. By contrast, at In Home they do all the behind the scenes stuff like advertising, hiring, background checks, training, etc. but I do the more personal interview and decide who comes in to help me and when I want them to show up. That way it ensures that I get help from competent PCAs who can handle my routine successfully, and that I can get along with day seven days a week. It’s been a great partnership and I have Kevin to thank for that.

Above all, Kevin Sullivan’s advocacy for supreme independence and his business acumen for starting and building In Home Personal Care to what it is today are something to be admired. And the great news going forward is that the day to day operations of the company will continue to run uninterrupted and stay committed to Kevin’s vision of providing quality personal care services to people with disabilities.

May he rest in peace.

(*A virus left my computer—and a large portion of the draft of this post—out of commission for the better part of this past month or this would have gone up more timely.)