It’s beautifully sunny here in Florida and that means temperatures are rising. We thought we had finally conquered the Behemoth that the A/C systems in our current conversion van had become but, alas, we have yet to slay that vacuous consumptor of freon.
For ten months now we have patched holes, replaced hoses, changed seals, rerouted lines, welded parts, and tested and retested, and have yet to manage the seeping wound that is guzzling freon and not giving back.
As temperatures climb, so does the heat index inside that steel monster we call The Beast, and driving with the windows down does little to cool anyone in the van who isn’t sitting in the front seat. Tan is the most affected by this as his body is unable to regulate its own temperature.
As we continue to sink money into repairing our existing wheelchair van we had to take a beat and think about if it’s worth doing. Up to this point the answer has been a reluctant “yes” as we are still so very far from reaching our goal to purchase a new conversion vehicle. Yet, we held firm in the belief that as we were working towards Tan’s independence, the things we have done are in place. One of these things was last year’s very important driving evaluation to determine if Tan is able to drive.
After passing the evaluation with flying colors our celebration was short lived. There was conflicting information coming from all sides about how the evaluation would work. The battles began almost immediately. From the beginning we have been very open with every agency that we have worked with that we aren’t willing to make decisions on little information. It has been very important to us in all facets that we look at as many options as possible and have very concise reasons for the choices that we make. It’s not just about good decision making, it’s also about safety, quality, dependability, and independence. At every turn we have run into inexperienced professionals, demanding know-it-all professionals, and professionals who contradict one another. The driving evaluation has managed to pit us in the ring with all of them.
At the start of the driving evaluation we discussed how Tan would be able to explore the many options available for driving conversion systems. It was explained to us that the driving rehabilitation specialist would bring several control systems that represented the basic driving styles available. The reality at the driving evaluation was one example of one driving system chosen by the driving rehabilitation specialist based on the information given him on Tan by another professional whom received their information from yet another professional and one vague personal evaluation to look at Tan’s range of motion. On one hand that works to our advantage as it didn’t take much to qualify for the needed evaluations. On the other hand it resulted in this singular available option that hardly let us explore all the available driving and modification options available to the one person who needs to know the most.
Some months later we were called in to speak with Tan’s counselor at Vocational Rehabilitation, the state operated employment program that helps persons with a disability to obtain education, employment, and the necessary adaptive equipment to remain independent at both. Assisting paying for the conversion or modification of a vehicle for transportation in order to obtain employment is one of the program’s many functions. Essentially, the organization runs point throughout the whole conversion process, beginning with the driving evaluation. This is the meeting we learned that the recommended driving system chosen by the driving rehabilitation specialist would cost an estimated $101,000 plus. We also learned that Vocational Rehabilitation had changed their policy on the required insurance for a modified vehicle they had any part in paying for. Originally requiring only full coverage insurance on the vehicle, the program now requires that insurance also be purchased for all the components of the driving system and vehicle conversion. That stipulation can easily raise the monthly cost of insurance to $1,000 or more.
It was news that we’ve been stewing over for months now, but perhaps the worst news was yet to come. Last week Tan had another meeting with his counselor. We found out then that the counselor had never received the recommendation, evaluation results, and cost estimates that were to result from the driving evaluation–a critical component to this whole process of getting a vehicle converted to meet Tan’s independence needs. This certainly explains why our requests for copies of this paperwork has gone unheeded for months now.
Unfortunately, as we have spoken to other across the nation in the same campaign for independence as Tan, this is just one of the common cracks in the system that we all trip over. It’s why we must continue to fight each day and with every case to effect change.
We will continue the attack on the frontlines, but perhaps most important is raising the much needed funds we are working towards on HQO Project’s goFundme. The more money we are able to raise, the more options available to Tan. If you would like to contribute, please consider donating via www.gofundme.com/helpaquadout. If you have a service, trade, or access to influence you are willing to donate to the cause to help raise money, we’d love to hear from you. Leave a comment below with your idea, or contact us via Facebook at www.facebook.com/helpaquadout with a private message.