Wheels travelling today!

Mom and I will be on a plane at 7am heading to Philadelphia. I've attended the American Occupational Therapy Conference before in Long Beach, CA and in Miami, FL but this time it is a different experience. I'm attending as the Iowa Alternate Represenative to the "legislative" body of AOTA - I get to experience how things are run at the national level. The Task Group I am involved with involves Complex Rehab Technology...this involves the higher level wheelchair evaluations. The AOTA is trying to give guidance to what CRT is, education/experience needed, and referring on to someone else if one does not have the skills. This runs parallel to what the vendors/suppliers at the Continuing Education and Legislative Advocacy conference, NRRTS and NCART, along with the white papers taken to the Hill in Feb trying to get a separate benefit for CRT. Also will be taking a variety of courses on wheelchair evaluation, stroke and hand rehabilitation, Wii for Parkinson's, and LOTS on driving/community mobility. I may not post again until next week but will have LOTS to share! (and will probably be doing some back ground information on CELA and the other advocacy work/learning I've done in the last year! Have a GREAT week!

Loneliness

Being a wheelchair user in a small town can sometime be very lonely. There are many things in my everyday life that are "out of the ordinary", that many people take for granted - going up and down stairs, access to bathrooms, spontaneity, travelling without planning etc - some of which I just can't do alone. I miss my independence and not having to have a "helper" mainly my ever reliable mother who I would really struggle without. It sometimes sucks to live with my parents, to not have a significant other to rely on instead. BUT, everytime I start feeling a little bad, I'm reminded how truly lucky I am. I have a very supporting loving family....I have the most amazing friends....I have luckily been open to being in the right place in the right time to live the life I live. So maybe the moments of loneliness have the purpose of reminding me that with all my blessings, I need to stay positive, be appreciative of what I have, and use what I've learned to help others not be so lonely :)

New Wheelchair!

Got the news yesterday that my new wheelchair is waiting for me in Des Moines, waiting for my final fitting! It is granny smith green for a change of pace. It's a little disappointing knowing that I don't even qualify for the same quality/category chair K0005 through Medicare and settled for a K0004 (even though I could probably not tell you the difference between the two - except that they told me the axle was different and they are changing it our for me). I just hope it rolls better for me! I just think it stinks that I've had to fight for 2 years for this chair and it's not even the same type as my current chair. That even the company I'm working through, has had enough denials even at the judicial level that they will not even be offering the K0005 chair anymore because NO insurance is covering it. Just wrong! For those of use who rely on our wheelchairs as our only source of mobility, we should qualify for the chair that will last, not break down and even prevent injuries, that may keep us from living our lives!

Beauty in Difference

I had the chance to watch 2 beautiful, moving films this weekend. They both show the best and the worst in humanity. "Phoebe in Wonderland" is about a 9 yr old who is struggling internally with Tourette's symptoms that she does not understand, like saying hurtful things before being able to stop herself and counting/jumping certain amount of time and hurting herself all intertwined with a dysfunctional family, a bad principle and a lovely theater teacher all themed into Alice in Wonderland. How much we want people to fit into the "norm"...but what is the "norm"? We all have eccentricities, some of us are just better at hiding them...or are in denial. Next was "My Name is Khan" about a man of Muslim faith with Asperger's living a good life until Sept 11. Again, we have such assumptions when we begin to classify people! All Muslim's are not terrorists just like all people with disabilities are not helpless! I feel that is part of my "job" being a "roller" /having a disability. To share mine and other's stories of successes as well as struggles - which we have just like anyone does! Even though it is prefaced from all the good old fairy tales (which helped ruin my romantic life :), I still believe in good over evil and in the biblical theme that by treating others as you would want to be treated, that we may still survive as a human race.

Representative Assembly

On April 12th, Mom and I will be travelling to Philadelphia for the American Occupational Therapy Association Conference where I have the honor of serving as the Iowa Representative to the legislative body of the association. I requested to be part of the task group affiliated with Complex Rehab Technology, since that is also what I know most about from advocating for a bill to be passed regarding this.....In this format, it is trying to decide how the AOTA and OT's will best serve clients needing wheelchair evaluations. Very interesting to be involved in yet another aspect of wheelchair use. Fortunately, most of the association is for having higher guidelines for OT's serving those needing Complex Rehab Technology. It will be an interesting trip in many ways. Although it is reminding me that I have NO political dreams! All this legislative process drives me crazy!

It's all coming together...

I listened in to a webinar on advocating through the Christopher and Dana Reeves Foundation today, and surprisingly enough, they are most concerned about how funding is getting cut AND COMPETITIVE BIDDING....which of course the "normal" person would have no reason to know about this but even scarier, the people that SHOULD know about it, the end users of durable medical equipment don't. Competitive bidding began this year in 9 cities/areas and what happened is that Medicare comes in and gives a few of the many vendors a contract to provide services to person's on Medicare. Many of the larger nationwide companies are able to underbid the local vendors - this affects quality of care - the smaller local vendors KNOW there consumers, stories and struggles. Taking business away from the smaller vendors puts them out of business (sometimes losing 50% of vendors in an area) who will never bounce back. This makes it harder for the consumer to get the right equipment. AND when the consumer does not know about this, it is very difficult to find out who has the contract and many times the suppliers/vendors are not even sure....It's kind of a mess, which is the nicest way to put it! I'm hoping to work with People for Quality Care who is an advocacy group through VGM to spread the word! Please check them out and support them - www.peopleforqualitycare.org

How's this for a title?

I've decided to refocus my speech for nationals - "The Under Recognized Minority - Wheelchair Users: Education, Empowerment and Advocacy". Notice I did not say "confined to a wheelchair".....one of the many interesting things about belonging to a subculture and social media, is that you really get to see what sets people off. Being "confined" is one of them and it bothers me to. I'm not confined to my wheelchair....I can get on my bike, onto a couch, into my car and into a pool if I want to. Many "walkers" see us in our chairs and maybe feel sorry for us or my think "I'm glad I'm not in their shoes" but I've been on both sides....and being in a chair isn't so bad. I get to make really bad puns like "You rock but I roll"....when my mom tripped she said "I can't walk" and I looked at her and said deadpan "Neither can I". Going up hills may be a drag but going down them? WAY more fun than walking! The only 2 times it ever bothers me to be on wheels is when the environment doesn't allow me to do something (hotel rooms are the WORST) or when people look down on me/think I'm not capable. But that's part of my job as an advocate...to educate as many people as possible to show that even though I may be on a chair (aka a "roller) I can do anything I put my mind to !!