NCART Conference 2014
Priscilla and I had the pleasure of attending the Complex Rehab Technology Conference at the end of April. I've been wanting to write about it for some time but things have been pretty crazy here; we just bought a condo and our wedding is in June. This whole CRT concept was new to me and Numotion was kind enough to fly us to Washington DC after one of their executives heard Priscilla's testimony streamed from the Colorado House of Representatives back in March. I came along as her PCA/fiancé, not a bad gig if I do say so myself! It was a short trip, we left on the 28th and were back home on the 30th. For those of you not familiar with CRT, I'll explain it as best I can, although sometimes I'm not sure if I'm quite familiar with it. Basically, this is technology that you can't find on TV or in a medical supply store. In this case, the primary focus was on wheelchairs like Priscilla's Permobil which was custom made for her. I was there throughout the entire process of the making of that chair which was fascinating. Much more interesting than the painting of my prosthetic eye, I think.
Proponents of this type of technology are suppliers and consumers who need this technology to live more independent lives. Priscilla could not live in a standard wheelchair such as those advertised on late-night TV because she would break bones consistently since she has OI. It is essential that there be a custom seating solution and multidirectional hydraulics for her to do all the thousands of things that she does.The purpose of the conference, then, was to establish CRT as a separate category in the medical hierarchy along with things like prosthetics and orthotics. The money is there in the budget, it's merely recognizing that this is an important category to be separated from the typical scooter and wheelchairs. These are the custom wheelchairs that require Medicare or Medicaid coverage, doctors prescriptions, physical therapy evaluations, etc. Tuesday night Apr. 28 was spent at a reception. It was a very packed hall and we had, unfortunately, arrived later than we wanted to.
Nevertheless, Melissa at Numotion greeted us warmly; a very genuine caring individual in all senses of personality. Traveling makes anyone tired and it was an early night and even earlier morning for us.The next day was spent in sessions relating to CRT. I skipped the morning so I can't comment on it. I went later to lunch. I met Fred Arthur (one of the main managers of the conference) at the door of the reception hall. We had met very briefly before and I told him who I was looking for. I said, "ordinarily, I would tell you that she's the one in the wheelchair, but I suppose that wouldn't do much good this time around." I must admit that my memory is a bit hazy regarding the details of the afternoon sessions, but I do recall thinking that I had no idea that such a field as CRT existed nor did I know how nuanced and detailed medical regulations could be.
We were then briefed on the next day's events which were to be conducted at the capital. We all have schedules of the Congressman/Woman who we were to meet with. This lobbying was the main goal of the trip. Anyone with a story like Priscilla's, along with her magnetic personality, could surely win even the most staunch opponents over. The evening was spent at a fantastic dinner given by some friends of Priscilla's. A truly delightful evening with great amounts of hilarity. This hilarity was magnified tenfold primarily because the waiter kept refilling our wine glasses. If you were there, I need not tell you about these people and their genuine warmth and sincerity both to us and to the mission of the conference as a whole. Thursday was spent waking up late from varying states of sleep, some more fitful and useless than others. We arrived at the bus at 8:00 and, due to various traffic issues, were late to meet our first senator staff aid. I won't bore you with the details of the meetings, but basically it was Priscilla telling her story and others testifying to the essential functions and benefits of CRT. I'm sure somebody here remembers, but I don't know exactly how many people signed on to the bill that day but both House and Senate sides received great national support.
I maintain that this is because of the large number of consumers present to state their case in a legitimately honest and sincere attempt to make officials understand that, in reality, this group is not asking for new planets to be explored or mountains to be moved. They simply want to be recognized and given treatment equal to what others have. I feel very strongly for a cause that I knew nothing about until last November at the AUCD conference. The day was hectic but ultimately successful. One of the Colorado representatives signed on about a week and a half later. I would also like to point out that the bill passed in Colorado with a 12 to one vote in the representative chamber and a unanimous vote in the Senate chamber. This is, of course, due to testimony from people such as Priscilla and many others. Oh, by the way, the person who voted against the bill in the representatives, yeah, we have his number. Overall, the conference was, I feel, a rousing success. All of the participants had one goal in common so debate was far less of an issue than other conferences I have attended. You can tell how tirelessly people work to organize a conference when it is pulled off with such great success as NCART was. As an update, the Colorado version of the CRT bill was signed into law last week and my future wife is the owner of the pen which the governor used to inscribe it. She engraved it with the number of the bill. It is in a box at present to keep it safe. It's going to be on display in the new place when we move in at the end of July.