Last Tuesday I had a ton of medical appointments. I arranged carefully the week before, to avoid missing therapies and repeating city-suburb commutes. When I called Medicaid for my ride to the hospital, I discovered traveling needs had been outsourced to a private company, which in turn had subcontracted them to another accessible car provider… By Monday evening, I was still unsure whether someone would pick me up. Not until 10 PM could the sub sub contractor’s customer service officers – who patiently put me on hold every hour– confirm someone would be there for me the next morning.
Imagine my dismay when at the appointed hour, rather than a car, I received a phone call with apologies for the unexpectedly canceled transportation. Of course, I would be reimbursed for the ride ($10!), but would have to rearrange my appointments.
Rest assured – I finally did make it to the hospital, albeit a little late and a little poorer (private transportation companies don’t come quickly, or cheap, to the suburbs). Still, in the days leading up to my many scans, I did nothing but call offices, ask for managers, and enjoy the particular dissonance of “on hold” music. And, it could still fall apart in the end. It was another reminder that between attending therapy and arranging for my disability-hampered life, I have two full-time jobs. In the meantime, how am I supposed to prepare for school? Be a successful lawyer?
Yes, I’m consistently amazed at how many resources there are to help me arrange for a safe, healthy, dignified life. But I want more. I want to live and achieve in ways I thought possible before my accident. I want to forget the constraints and responsibilities of my wheelchair. And if I can do that, I want to help others feel the same way.
That’s why we fundraise. Two days after my appointments, we bought an accessible minivan. The Special Needs Trust covered 80% of the cost. There was no way I could’ve dreamed of a $50,000 Toyota Sienna (sic!) otherwise. It means mobility, independence, and one less government agency to wrangle. It means more time for school, work, freedom.
Unfortunately, the car is not my last such expense. But little by little, with the generosity of others, my life is getting easier. I’m unbelievably lucky that so many people have chosen to help. I’m convinced that someday soon, I’ll be paying it forward. Thank you!
Incidentally, the 2007 government report on the Americans with Disabilities Act succinctly makes the point in my post, as related to job success:
The ADA’s antidiscrimination requirement can prevent an employer from refusing to hire a qualified person simply because the person has a disability, and the ADA’s accommodation requirement can force the employer to make some changes in facilities or job tasks to enable individuals with disabilities to perform particular jobs. But those mandates do not require the employer to provide in-home personal-assistance service or transportation to enable an individual with a disability to get to work, nor do they require the employer to provide the individual with health insurance coverage that is as adequate as he or she can receive through Medicaid. (90)
That is, the ADA is great, but can only do so much. You can read the whole report here.