Home, Sweet -- Apartment

Let’s talk about my living situation. I live in an apartment, by myself. Have you ever been online shopping? Bought the shirt, but it was a slim-fit instead of husky-fit? Definitely, not what you expected… Story of my life. But now I’m referring to my experience with apartment hunting online, from Florida.

After I decided to accept the job offer, and determined that it was financially possible (benefits and all,) I had to find a place to live -- and it had to be found fairly quickly! The idea of the job came about around the end of October, and my goal was to begin in February. Call me ambitious -- but I needed even more: a place that was wheelchair accessible, fairly priced, and within transportation routes. A) my motorized wheelchair is my primary mobility device; B) my income was a part-time job and Social Security benefits, and I had to budget out practically for two because of Personal Care Attendant costs, my own expenses; and C) because I don’t drive yet, I had to make sure I had a way of getting to work and accessing my [new] community.

Finally! “Contact Us” was clicked and my email was sent! “Are you within walking distance of a MARTA bus route?” “Are the sidewalks easy to ride on?” “How about the apartment itself? Would a large, 300-pound power wheelchair be able to maneuver throughout the home easily?” It only took 20-25 different times for me to send those questions out, and to receive the response I needed to read. I thought I was getting one heck of a deal. My first place was waiting for my arrival.

Moving day came -- my best friend and I drove to Atlanta. What a trip! An 8-hour ride, plus loading and unloading of my things. And I was just the passenger… (I love my friends!) Anyway - We went to check out the place, only to find that the bathroom was not accessible. My wheelchair -- with six wheels and an engine -- was in no way, shape, or form fitting in the bathroom meant for an average-sized, standing person!  Fortunately, my employer did not give up as easily as I was willing to. (What?! With one full day left before starting my new job at the time, there was no way I would find a place by then! Or so I thought.) Meanwhile, if it wasn’t for the housing specialist and the nursing facility transition specialist, I don’t think I would have a place that meets my criteria as well as the place I’m in today does.

Since I moved here, I have lived in the same apartment. Too often do I get the “deer in headlights” look when I tell people that I live alone, and not in a nursing facility. It is more than possible. It’s just a matter of how badly do you want it? The resources are out there and your network of friends and family is there to help seek those things out, if you need it.

My home fits my needs, and was decorated by my taste. Check out the following pictures of some areas in my home:

Remote controlled deadbolt lock I have installed on my front door.

My idea of decorating - Haha!

Step 1 of my "PCP" - Gainful Employment & Benefits Management

    You would think for Step 1 of my Person Centered Plan - which isn’t considered a formal PCP like this one - I would have had who was going to be a part of this set and ready to support my efforts. Technically, you’re right. But, they were already established -- they just weren’t aware of it yet…

    Going from the state where I had my strong support system of family and friends, to another where I knew no one, really, happened for of a couple of reasons. 1) I was offered a job. One that was very similar to what I had turned down. In the past, due to fear of being unprepared. So why not take advantage of this second chance? And 2) I was seeking change in my life. A change that involved having more control of my life. Well, imagine that; I ended up with complete control.

    To be self-sufficient, being gainfully employed needs to exist. When I was offered the job, I was told that it was going to be part-time, with such and such hours, and other details I needed to make this decision. For the most part, I knew how to figure everything to start a real budget. Something manageable that didn’t land me back in FL too soon. 

     If I was moving, this was going to be long-term. Yeah, Social Security benefits are there every month. But it shouldn’t stop there. That way you can say, you’ve earned purchasing such and such or that you are able to go anywhere within your means with your peers. Empowerment and self determination. Being responsible with this is where those two attitudes/feelings derive from. Before I made the final decision, I had to really think. “How much would I be earning?” “What would my hours be like?” “How much would I be spending?” “Woah! No more college life?” Did you know that when you’re looking into renting on your own, it’s ideal to anticipate that expense to be approximately one-third of your total income?? I inquired thoroughly about the rules that come with being a productive/working citizen of society. “What’s my income cap, before I lose my benefits altogether?” “Are there resources that can help me save my hard-earned money?” “What if I want to buy a car or house of my own one day?” Of course, there are many more questions to be asked. The person I was advised to reach out to for these answers was a benefits navigator. With their support, and the knowledge of my employer, my schedule was set to fit the path to gainful employment.

Develop a Plan

A home, food, job, transportation, health care, hangout sessions with friends… You know, just the “basics” of what a person might want in life. Because we [people with disabilities] are people too, we also want these things. Our basics may consist of the need for supports in those areas, which may not be easily accessed. But that doesn’t mean it’s not possible!

Before I continue, I want to note that the things I share, in these blogs, are merely ideas and potential advice. They are my experiences, and the routes I took towards making those experiences successful. If our scenarios align well enough to where you feel doing as I did will work for you, own it! Then, feel free to share with me what worked, what didn’t, and what may have needed to be tweaked along the way. Your story is just as beneficial to others, as you might believe mine to be.

As I mentioned in my introductory blog, I relocated from Florida to Georgia, and now live independently. I didn’t achieve this feat by myself though. And I was at no level of experience to be able to just do it -- pack up and go. Now, it’s just a matter of how to fulfill those wants and needs, in a responsible manner. This would have been the third time I transitioned towards independence. But this would have also been the time when I created an effective plan. One that was based/created by me.

The process of creating my plan could and could not be considered Person-Centered Planning (PCP.) “Could” because I knew where I wanted to work, how/where I wanted to live, with whom I wanted to build relationships, some ideas for what additional resources/supports I needed to pursue, and just about when I wanted all of this to come to fruition. “Could not” because it wasn’t a formal meeting where big players of my team came together and created true timelines, determined what their roles were, and so on. Sometimes, formal is necessary though. A team of your creation can come together to develop a plan for your future. I repeat -- YOUR future. The person whom the plan is centered on is YOU! What do you want to do to make money? What area of the world would you like to live in? How do you access your community for support? And when are you hoping to see some action?

Once you’ve determined what you would like to pursue in the future, you can reach out to  Parent to Parent of Georgia (P2P), one of the many statewide resource providers!

Hi there! I go by Sukie or Sukhwa . . .

Hi, there! I go by Sukie or Sukhwa, and I’m 26 years old. Before I continue -- or you continue reading -- I should warn you that I possess the keen skill of getting off track. I’m working on this, but I can’t help it! I enjoy sharing things, but there is just so much to share. When something pops into my head, I say it or type it almost immediately (after careful consideration, of course,) so not to leave anything out...  I can’t promise the wisest of words in this blog. But I can say that people think I’m humorous. So perhaps you will get a good laugh or two in? I guess, that’s for you to determine.

All right, back to my story.

For a little over a year, I have been a resident of Georgia. Before taking the leap to live here independently, I lived in the Sunshine State -- Florida! Boy, how much I miss it. Great friends, gorgeous weather, so many memories… As a young adult, I was missing something. Yes, I was making my own decisions (good, bad or indifferent - they were still mine.) I just felt as though I had a little more room to make this life more of my own -- but how?

When I was 16, just finishing up my junior year of high school, my parents, brother and I moved from Connecticut to Florida. Whenever anyone pursues a transition of any kind, it’s advised that they seek the proper supports and start to become familiar with local resources. And that’s just what my parents had done for this big move. Yeah… I was pretty dependent upon my parents, compared to my level of independence today. Shortly after getting settled in the new state, we went out on search for the resources available, and I was introduced to Independent Living (IL.)

It’s not what you think -- or perhaps it’s exactly what you think. But from my experience with sharing about IL, not often is it common knowledge of the audience. IL doesn’t only mean moving out, and getting your own place. Unless, that’s what you want your goal to be! It is more of a philosophy, a culture, a movement -- amongst the disability community. You, as a person, have your own needs and wants -- with or without a disability. With personal goals, you choose how to go for them. Make the decision to do so, seek and utilize the appropriate supports, and run with it! In the end, no matter what the outcome, it feels better to know that you were in control the entire time.

Remember when I mentioned having been dependent on others (e.g. my parents)? Well, the whole IL thing was not the easiest concept for me to grasp, at the time. Thanks to the FL Independent Living Council (FILC) and their strong faith in youth, I caught on and began creating my independent network of supports. It was quite the transition. And I mean that in every positive way possible. It wasn’t and isn’t always easy or fun. But it will always be worth it.

Once I gained self-confidence, I went for the control I wanted over my life. At the age of 19, I moved out of my parents’ home. Trial one was a bust. (I never said I made the best decisions…) Not a total dud; the experience was well-worth living. The scenario just wasn’t the most ideal… Then, I moved in with friends in Orlando, FL where I had to start making more adult-like decisions (e.g. going back to college, setting up my personal care needs, transportation, how to appropriately spend my money, where to party that weekend, and so on.)  I was living life like any other college student -- fun, yet broke.

“But, Sukie, how did you end up in GA?” I’m glad you asked.

Being a person with a disability (Arthrogryposis) I try to be active within the disability community because I can’t expect change without playing a role in making it happen. I am a part of the Association of Programs in Rural Independent Living (APRIL) -- which is a network of Centers for Independent Living (CILs) and other disability focused organizations that come together to strive for and promote equal access in all areas of life for people with disabilities. It just so happens that the Executive Director of my position with the metro-Atlanta CIL, disABILITY LINK, is also a member of APRIL. She saw potential in me to be a Youth Specialist, and I’m a sucker for people who believe in me. With her and my many other supports, I did it! I decided I wanted to live in Atlanta, independently. I coordinated my personal care supports, acquired an accessible apartment, did the mathematical figures to ensure I wasn’t going to need to return to FL within a few months, learned the public transit system, and took overall responsibility for my own life. And being on my own -- outside of working, -- I have learned so much about myself.

 

A few things I have done that not many people expect: skydiving, considered being a Paralympic swimmer (tried a session with a real coach once,) been wall climbing, raced on an erg machines, some stand-up comedy, photography, cooking, baking, and surfing. Most of which was adaptive to fit my abilities. But I’m still able to say that I did them.

Now, May 21st, 2015, things became more interesting. That is my official start date, with Parent to Parent of Georgia -- as their Information Project Specialist. Through both of my jobs and my life in general, my ultimate goaI is to be a supportive resource to you on your journey towards discovering yourself and achieving your goals. I can’t promise an easy process. But I will shoot for fun and interesting!

Follow along, as I share photos, resources, videos, and/or more writing related to youth and young adults with disabilities.