When you live at home, your parents tend to do everything for you. Food just magically appears in the refrigerator, electricity and water grow on trees and your service dog’s piles in the backyard disappear into thin air.
Along with freedom and independence, living on your own comes with a whole new set of responsibilities. Your neuromuscular disease (mine is Friedreich’s ataxia) may not allow you to use the oven or stove safely, but you can decide on the meal, come up with a grocery list and go to the grocery store.
I needed that responsibility. It was time to move out of my mom’s house and start doing what I could for myself.
To make this moving-out thing work, I was going to have to wage war, and what war could be won without a battle plan? That’s when I came up with Operation Get a Life.
Strategy A: Get on Arizona Freedom to Work
I knew I’d need more caregiver hours when I moved out. To get those hours paid by the state, I needed to qualify for my state’s Medicaid programs, Arizona Health Care Cost Containment System (AHCCCS) and Arizona Long Term Care System (ALTCS).
|Arriving home on Coyote Run|
Because of my income as an MDA staff writer, I couldn’t get on AHCCCS or ALTCS. But I didn’t earn nearly enough to pay for the number of caregiver hours I’d need after moving out.
A Quest article on Medicaid buy-in programs (“Buying into the Workplace,” May-June 2005) spurred me to find a similar program in Arizona. Through research and many phone calls, I found Arizona Freedom to Work, a program that would allow me to work and receive AHCCCS and ALTCS benefits by paying a monthly premium.
After getting on the Freedom to Work program, I met with my case manager to find out the maximum number of caregiver hours ALTCS would let me have when I eventually moved out of my mom’s house.
Strategy B: Find a place to live
Because of the horror stories I’d heard about the unreliable wheelchair-accessible transportation in Tucson, I wanted to live in Oro Valley (a suburb of Tucson) because its van system, Coyote Run, is extremely reliable and would get me to work on time every day.
Renting was the only option for me. It was too expensive to purchase a house, and since I’d never lived on my own, I didn’t want to buy a place and then find out I couldn’t make it work.
I decided to rent an apartment instead of a house, so I wouldn’t have to take care of a yard. The next step was finding out about wheelchair accessibility.
I called eight apartment complexes in Oro Valley that I thought would meet my needs. Only three were both accessible and affordable.
|Signing the lease with the apartment manager|
Of those three, one had wheelchair-accessible units, but those few units already were taken. The other two complexes had rules about making modifications: You could hire a contractor to make modifications as long as you put the unit back exactly how it was before you moved in.
At first those rules sounded ridiculous to me, but it turns out that apartments are well within the law to make such requirements. According to the Fair Housing Act, apartments built after 1991 must have doors and hallways wide enough for wheelchairs, and reinforced bathroom walls to allow for grab bar installation. They’re required to allow modifications, sometimes at the expense of the renter.
Since I’d have to pay to modify an apartment complex no matter what, and the rent was about the same, I decided to go with Rock Ridge Apartments because they’re right across the street from Target and PetSmart, and I could take my power wheelchair over there to get groceries and dog food for my service dog, Chance.
But I held off on signing a lease. There were still so many things to be done before I was ready to move in.
Strategy C: Make modifications
|Discussing modifications for my bathroom vanity|
Because I cover disability issues for Quest, I knew that the state’s Department of Vocational Rehabilitation would help pay to modify my bathroom, as I needed an accessible bathroom to help me get ready for work. So I called to get the ball rolling.
At my initial meeting with my Voc Rehab counselor, the first thing I wanted to know was if the agency would pay to uninstall the modifications if I decided to move out. The answer was no. For this reason, I decided to modify only my bathroom and closet.
I’d need a cut-out under the bathroom vanity, a grab bar by the toilet, a hand-held showerhead and a bidet. I decided to buy an inexpensive sliding transfer system for the bathtub, which I found on the Internet.
My counselor set up a time for Cherokee Construction to come to the apartment for an evaluation. Since I hadn’t chosen a unit yet, we used the model apartment for the evaluation.
|Pulling up to the sink after modifications|
In addition to my other requests, Cherokee Construction suggested putting two lower shelves in my closet and installing a remote control system in the ceiling fans (one in my room and one in the living room).
They wrote an order for the work, but before construction could start, the order had to be approved, a process my counselor said could take anywhere from a few months to a year.
Finally, several months later, I was notified that construction could start, so I picked my apartment unit and signed a 12-month lease.
Strategy D: Find a roommate
Looking for a roommate was a challenge. I needed not just any roommate, but somebody who’d assist me during those hours not covered by ALTCS, in exchange for reduced rent.
I considered the amount of rent a typical roommate would pay and the amount of help I’d need, and after careful calculation, came up with the magical amount of $150 per month. I also decided to pay for the utilities.
I now knew what I was looking for and set out talking to friends, neighbors and co-workers to see if anyone needed a place or knew someone who needed a place. I was having no luck, so I made some signs and put them up at two nearby hospitals, a few community colleges, a crowded coffee shop and the Oro Valley Public Library. Friends suggested I post ads on www.craigslist.org and www.roommates.com.
I wrote general ads, and figured we’d talk about the specifics when they called:
Live Almost Rent-Free in Oro Valley
I’m a 28-yr-old woman in a wheelchair looking for a female around my age to share 2 bed/2 bath apartment. Your rent is only $150/month in exchange for part-time help (transfers to and from wheelchair, light cooking, occasional transportation, etc.) Utilities included. Must be drug-free, caring and responsible. No caregiving experience necessary. Call Kathy at (520) 555-6712.
All of the responses came from either craigslist or Roommates.com. I began speaking with potential roommates and explaining the terms of the agreement, which would be spelled out in greater detail in the contract.
Of the lady with the 12-year-old, the woman with a 45-pound dog (my apartment disqualifies pets over 25 pounds, excluding service dogs, of course), the religious fanatic and the 27-year-old from Rhode Island, I chose the Rhode Islander (let’s call her Becky) because I thought she’d work best.
|Posting signs, looking for caregivers|
A word to the wise: Stick with people who currently live in your state. And make sure they already have a job or something that ties them to your area.
When we talked on the phone, Becky mentioned how much she enjoyed cooking, which was great because that was one of the things I needed help with. Since she lived on the East Coast, we couldn’t meet until her dad drove her to Arizona (another red flag). A few weeks later, they set off on their five-day journey southwest, and we met at my apartment the day after they arrived.
Since Becky’s dad was going home and she needed a place to live, we signed the contract right then. My advice: Take your time and get to know your potential roommate, since he or she will be helping you. Don’t let this person rush you into anything.
My plan was to sign a six-month contract, but because I couldn’t move in until I had a roommate, we signed a four-month contract agreeing that she’d help me 20 hours a week plus be there overnight.
Strategy E: Manage caregiver hours
Once I had a roommate and we agreed on her hours of help, I figured out what hours I needed ALTCS to cover. Next, I set out to find caregivers to cover those hours.
Since I’d had trouble with caregiver agencies in the past, I decided to go with a consumer-directed agency where I’d hire, manage and fire my own caregivers, the agency would pay them and ALTCS would pay the agency.
I posted an ad on Craigslist seeking caregivers, and it didn’t take long to find a good-sized group.
Strategy F: Dealing with roommate issues
At first, our arrangement worked out great. Becky kept up her end of the bargain and was around 20 hours per week. There was just one problem: The first month I ate TV dinners every night. Cooking dinner five times a week was in our contract, and she had said she loved to cook.
The second month we talked about it and planned on going to the store together to shop for ingredients, but that never happened. Stupidly, I just let it go.
Becky paid the first two months’ rent without delay, but when I asked for the third month’s rent, she said she had to sell her car before she could pay me. Stupidly, I agreed.
At the end of the third month (for which she still hadn’t paid), Becky left most of her belongings and moved out while I was visiting my family in Agoura Hills, Calif. I came back and found the apartment empty, except for my new kitten, Floozy, which my roommate was supposed to be watching.
|Chance opening the fridge for me|
Becky not only left me without rent for the third and fourth months of our contract, but she left me stranded without assistance. I was livid, but I had to calm down and figure out what to do.
I didn’t want to move back to my mom’s house and pay for an empty apartment until I found another roommate, so I called my case manager to see how many caregiver hours I had left from the maximum I was allowed. My case manager worked with me on the problem, but I realized I would have to start paying cash for some caregiver hours.
I found more caregivers through craigslist and put up fliers around the apartment complex looking for people to serve as back-ups if a caregiver became sick or went on vacation.
I didn’t need or want full-time caregivers, nor did I have enough ALTCS hours or cash to pay caregivers on a regular basis. These were the main reasons I wanted a roommate — to have someone to just be there in case I had to go to the bathroom, etc. As much as I respect and appreciate my caregivers, sometimes I need time to myself or with friends.
Strategy G: Find a roommate, take 2
Finding a second roommate has been a slow process. In the meantime, I’ve had to spread my caregiver hours out so I won’t use up too many. For example, on Saturdays caregivers come from 8 a.m. to 1 p.m., 3 p.m. to 6 p.m., and 9 p.m. to 11 p.m.
I stay alone at night, which is fine if I don’t have to go to the bathroom (I’ve been lucky so far).
I sleep with two phones on my bed in case I need help during the night or my morning caregiver calls in sick. I made extra keys for my caregivers so I could lock the door at night, and gave a key to a neighbor for emergencies.
Even though my mom lives near by, I’ve tried not to rely on her for help, because I want to know that I can do this myself. I’ve only had to ask for help once or twice.
This whole “Becky fiasco” was good for me because it taught me that I could survive without a roommate, and how to stand up for myself when I do find a second roommate.
This time I’m going to be smarter about it. The new contract reflects what I’d learned thanks to Becky. I’ve also become open to the idea of having a male roommate if the right one comes along.
I’m considering a new strategy: finding a regular roommate who won’t provide any caregiving help, and who will equally split the rent and utilities. If things work out after a few months, I can ask the roommate if she or he wants to provide some caregiving help in return for reduced rent.
Now I know that I can handle anything. With a few explosions along the way, I’d say Operation Get a Life is a huge success — so far.
Operation Get a Life didn’t always go off without a hitch — like the time I got trapped at my desk for two hours in between caregivers.
My afternoon caregiver had just left, and I was in a rush to finish an article due at work the next day. I sped over to my computer with the article on my mind, and somehow wedged the joystick under the desk, squishing me right up against the desk, making it difficult to breathe.
Panicked, I pushed against the desk, and was able to move back about a half-inch. Still stuck but able to breathe, I opted not to pick up the phone to call for help because I needed to force myself to work without the ability to procrastinate.
By the time my evening caregiver arrived and manually pulled my wheelchair free, I’d finished the article and was ready to enjoy the rest of my evening.
Another incident happened around Christmas, on my way home from the Target shopping center across the street. It was dark and cold and I was in a hurry to get back to my nice, warm apartment.
I have an even harder time using my hands when it’s cold. That, and the total darkness when there was a long break in traffic, caused my power wheelchair to swerve off the sidewalk. The right side of my chair was in the dirt. With the wheels spinning, I attempted to free it, to no avail.
Freezing my rear off, I realized that my cell phone was in my backpack, which was on the back of my chair so I could hold my big bag of presents. I tried to flag down passing cars, but the drivers couldn’t see me.
Sooner or later my roommate would wonder where I was and come looking for me, I thought. Two hours passed, and I was an ice cube, wondering if I’d have to spend the night out in the cold. Luckily it wasn’t raining.
Finally a man in a truck pulled over, just as a man who’d been shopping for groceries came up behind me. Together they pulled me out, and the grocery guy was kind enough to push me home because my hands were frozen and useless.
At work the next day, I told my boss what had happened. A few weeks later, I arrived at work to find a Christmas gift from my boss on my desk. I reached in the bag and pulled out a bike headlight that attaches to a hat brim, complete with flashing emergency lights.