Thursday, July 23, 2015

TSA = Traveling Sukie Adventures (Intro.)



Now that we’re caught up with back story of how I ended up in Georgia, let’s go right into a new fun series in my little world: travel. From July 26th through July 30th, I will be in Washington D.C. for the National Council on Independent Living’s (NCIL) Annual Conference. (Many thanks to Georgia’s Statewide Independent Living Council (SILC,) for selecting me to be their Youth Pledge.)
This is huge for me for a few reasons. A) I love traveling to new places, and revisiting those I’ve already been to. B) I may have an opportunity to meet some big names in the Independent Living Movement. C) I’ll be catching up with some old friends, and making new ones (networking.) And, D) I really love to travel!

If you’re older than me, then you may be saying to yourself, “Enjoy it while you’re young. You’ll be sick of the crowds and the rushing, when you get to be my age! It’s unnecessary stress.” At least, that’s what my mom says to me all the time... Although, I don’t think I will be sick of seeing new sites, tasting different foods, and getting to meet/know other brilliant minds of the world. So for now, it’s totally worth it! What I would like to fast forward through whenever I’m going on these adventures, are the [in]accessibility issues that I encounter. Primarily, deriving from staff training , or lack thereof. Here’s a Top 3 list of what I mean:
  1. How to safely handle wheelchairs [of all shapes and sizes] 
  2. How to safely transfer a person who needs seating assistance 
  3. How to respectfully communicate with the person with a disability

Me strapped into an aisle chair, waiting to board the plane.
Those are just personal obstacles. The rate of successful travel experiences isn’t as low as it may be assumed, however. I feel that a little responsibility lies on the passenger, as well as airline staff. An open mind, positive attitude, effective self-advocacy skills, and a corny joke here and there are great to project to the public. The already stressful situation is then eased a bit. 

For my next few blogs, I will break all of this down, while giving a brief review of this trip to D.C.

Tuesday, July 21, 2015

The PCA Part of My PCP



Employment – check! Housing – check! Transportation – check! Personal supports – Uhmm…. Right.
This was the most nerve wracking element of my Person Centered Plan. It's not only about finding someone who works in this career as a Personal Care Attendant (PCA) or Caregiver, and hiring the individual on-the-spot because they work for an agency. It is finding someone who is compatible with you personality-wise, and by physical ability.
A PCA is what a companion and a personal aide. They support me with housekeeping tasks (e.g. laundry, sweeping, light meal prep., etc.,) In addition, they assist with personal daily living needs (e.g. getting dressed, using the restroom, bathing, etc.) Relying on one person is a lot of pressure on both ends. This isn’t to say that it is impossible. I know some friends who work solely with one person. But there is a strict and firm understanding of responsibilities and expectations. Therefore, the ideal situation would be to establish a team. That way no one is burnt out, and appropriate boundaries between yourself and the service provider roles are set. Prime players on your team should be people who you feel comfortable being yourself around. Most importantly, they are striving for the same goals: your success and independence.
The way I am paired with my PCA’s is by my decision – also known as “self direct.” This also means [for the moment] that I pay them out-of-pocket until I receive funding from the Independent Care Waiver Program (ICWP.) I determine who will work with me, for how many hours during the day, at what rate of pay, and what the duties of the PCA are – all without a hosting agency.
Being an attendant care recipient, while going through the self-directed route, is a lot of responsibility. You are the “boss.” It’s important to play this role respectfully and effectively. I may have a positive, upbeat, friendly personality; but if my employee is not carrying out their end of the bargain (ie. Not starting their shift on time, always on their cell phone, not wearing appropriate attire - things that negatively impact me,) I have to be an efficient supervisor and address the issue(s) accordingly. Open communication is the key for a relationship like this to work for everyone!

Wednesday, July 8, 2015

Transportation Track



Now that I am employed and have a home to call my own, how do I get to and from said locations?? No vehicle to drive – other than my wheelchair. But I am pursuing this through Division of Vocational Rehabilitation. Without a vehicle of my own, I can choose from the following options:
  1. Call a taxi (not really doable because there are so few accessible cabs; however many there are available, require a week in advance to schedule a ride, and the cost is ridiculous,)
  2. Ask a friend (not everyone has a wheelchair accessible vehicle, nor did I even have friends to call at the time,)
  3. Use the paratransit service – MARTA Mobility (although a curb-to- curb service, organizing trips and days requires a lot of memorizing of exact locations, being up and far earlier than necessary, scheduling 24 hrs in advanced, and money - $4 each way,)
  4. Or hop on public transportation… 

Atlanta’s public transit system (MARTA), in my opinion, is fantastic! Not perfect. However, compared to the transportation method I used when I was living in Florida (paratransit), I am so much more independent! In addition to work, I go out with friends, clothes shopping, food shopping, and venture even further out to play with whatever photography skills I have. (Random note: all of the images in these blogs are ones that I took. You can click to enlarge them. What do you think?)
Typically, I ride MARTA’s fixed route. I feel more included in my community, and do you recall me mentioning costs in the above list? If you are eligible to use MARTA Mobility, riding the fixed routes [of MARTA only] is FREE! Plus, the fixed routes are more reliable. Their arrival window is within 5-10 minutes – worst case scenario, a bus is out of order. But the passenger has access to that information.  
For medical appointments or locations that I am not yet familiar with, I board my “convenient” alternative, Mobility. This helps me scout the new area for accessibility options, and to arrive at my early appointments. I wrapped quotes around ‘convenient’ because their policy is for the passenger to allow a half hour window from the directed ready-time. But often have I – and many others – waited 45 minutes to 2 hours for that vehicle to arrive (to pick-up or drop-off.)