I’ve needed to write a post about moving and simply have not gotten around to it. Then this morning, it occurred to me how I can sum it all up with the aid of lists. So let’s see how this works. I’ll attempt to briefly sum up the reason for the move, and then add some lists. Ready? Here we go.
I’ll not give details, but B and I split up and tried to stay in the house in Tucson as roommates, since I didn’t exactly have easy options for moving out. Life tends to offer little choice when living on disability, as I’ve learned all too well. Our lease was up at the end of September, and we were going to go month-to-month while I figured out what I was going to do.
I had a plane ticket to Washington to test things out. Doctors have told me for years to move to a cooler climate, and it seemed as though the Universe were nudging me to finally act on that advice. I had met someone on an iPhone app called Vorail, which is a voice only social network. You can see why the blind flocked to it, ha! His name is David and we quickly formed an intense friendship. He came to Tucson in early July and we clicked.
So, August 15 was to be the start of a test here in Washington, but then it turned out that B and I would not be going month-to-month after the lease was up, so I had nothing to return to.
I packed everything up and put it into storage in Tucson and brought with me to Washington, three suitcases, a backpack, and Jayden.
I could drone on about the travel day, but really there’s not much to say, other than I bawled my eyes out that morning after the movers came back and took my bed and my friend picked me up to drive me to the airport. Thanks Maritza, miss you! Leaving Tucson, the only city in which I’ve ever lived, for good? I didn’t yet know. Tears rolled down my face as the plane taxied and a man behind me told stories to his son about the things he saw out the window, how the airport had looked decades ago. I cried as I thought about my grandpa having been the accountant for the airport and how, at his retirement party, he was presented with two cakes made up to look like Alka-Seltzer tablets.
The roller coaster of emotion I had been on for months was taking another loop-the-loop. I was so excited to get here to David, to meet his nine year-old son, to see the house I’d heard so much of over vorail and FaceTime, to meet his family, to be near the ocean, but I was leaving my entire life behind. I was so grateful I had Jayden with me.
So that, in a nutshell, is the how and why I have been in Washington state for two months. Now for the lists of things I’ve experienced and learned that I think will be valuable for other disabled people contemplating a move to a different state. *Disclaimer: The following experiences have been my own and may not be the same for every state and/or every person with a disability.
Moving state when you live on disability
• Transferring your benefits is nerve wracking and scary, especially if you have a chronic condition like I do.
You can’t have benefits in two different states, but you’re limited as to how long you can be out of the state where you have current benefits. In other words, if you have an emergency situation, your hospital is covered by Medicare, but any medications are covered by your state, in my case AZ. I had a bout of diverticulitis after being here two weeks, Medicare covered my hospital but my medications weren’t covered. While I was recovering and sick from antibiotics, I was helping the hospital via the phone to get my AZ insurance stuff settled.
Rule of thumb: as far as I can tell Medicare is national and follows you. Medicaid is by state.
• Refill your medications before you go, and try to have more than a month on you.
Luckily, I was able to get three months of my meds before i left Tucson, all but my MS medication Gilenya. That’s been another scary thing, since I knew I’d be between insurance coverage. Luckily, I can get Gilenya straight from the pharma company temporarily until I get my insurance stuff settled, which is still a work in progress but will take a second post to explain. Maybe next Sunday ha!
• Do all this insurance research stuff before you leave your state.
I did not. Everything was happening so fast before I left Tucson, that figuring out benefits wasn’t high on my to do list. I thought, how different can it be? Mistake. Big mistake. Don’t assume anything. Medicare and your Social Security benefits are the only things that stay the same, but the majority of your day-to-day medical care, like doctors appointments, medications, and medical tests are covered by your new state’s Medicaid and those programs are vastly different. Luckily I now have Washington state benefits and the application process was much less of a headache than it was in Arizona, that’s for sure. But, their program is much, much more confusing than AZ.
* Be prepared for stress as you learn your new benefits plan.
Because I was honest about the chunk of my inheritance from Gamma I get every month, and because I can’t pay David rent lest his benefits get affected, I am not considered medically needy, which means I have a deductible of $3,400. Which resets every six months. I need to keep track of all my medical receipts and submit them to Medicaid every six months to prove I’ve met the deductible, or spend down as they call it. This means my Gilenya would need to be paid for out of pocket before the spend down is met. Thank God the Pharma company is helping, because I cannot miss a dose, and I don’t have $1,200 laying around every month.
• You’ll need a credit card.
I should say that all this is just one person’s experience, so don’t take what I write here as fact for everyone in every state with every disability. I could have done all this with no credit card, had I had plenty of time to get everything arranged, but I needed to put my stuff in storage and had no credit card. I don’t know what people do who don’t have a good support system, I really don’t. I’m also pretty scared about what’s going to happen with my medical stuff with no credit card and this spend down thing, but luckily there’s an agency here whose primary purpose is to help the disabled navigate the system. It’s called the Whatcom Alliance for Health Advancement (WAHA), and they helped me feel a little better about how I’m going to handle things.
• Take plenty of time to plan a move to a different state.
That’s my advice to anyone on benefits due to their disability. Give yourself plenty of time if possible. Moving is expensive for anyone, and when you have to worry about your benefits, the whole thing gets very overwhelming. Disabled housing takes years to get, so you’ll need to have a place to stay where you’re welcome for an extended period of time. If your temporary address is with another person on benefits, be aware that your presence might very much affect their benefits, which will affect yours since you won’t be considered to have shelter expenses.
Those bullet points are the things I can think of today that other folks on benefits might benefit (haha) from knowing before a big move. The most disheartening thing about all this has been feeling like I’m not supposed to fall in love with a blind guy. I’ve known that benefits are not family friendly, and now I really know it. I feel like, oh you’re disabled? Oh we forgot to tell you that you don’t have the freedom to pick up and move where you like, or to fall in love with who you like. I’ll be applying for disabled housing since combining incomes when you’re on benefits just does not work. How lovely.
and for Heaven’s sake, if you get a little extra from a family inheritance, be prepared for it to hinder more than help. Do I use it to buy the things I need for life in a cold climate that’s good for my health, or to pay my medical bills I’ll wrack up thanks to my health? My dad said, honesty is the best policy, unless it isn’t.
I wanted to end this post with more entertaining facts about my move, but I’m feeling rather mentally unstable today. Writing fun stuff would probably help, but I’m so tired after writing the frustrating stuff. I suppose this is motivation to write again soon, eh? I realized today that I’ve neglected the blog so much because I wasn’t living life. Now that I’ve moved, I’m living again! I know I was meant to move here, know it with all my being and I won’t let all the red tape kill my happiness. Not totally anyway. I need to have days like today to remind myself of how good I have it.
My next post will include pointers for moving from a hot climate to a cold one, and a story about a drone that nearly drove my dog insane.
***Parting thoughts: If your poop bag malfunctions first thing on Sunday morning, be prepared to have a shitty day.***