It is costly to be visually disabled.

I have really been struggling lately with the sheer cost of adaptation and assistive technology for the low vision and blind.  I am trying desperately not to whine, and to be grateful for everything that I have been able to purchase and the training I have received.  I am very grateful.  However, when I attend low vision support groups and there are folks in there who are retired on a fixed income I wonder how much they just give up because financially it is just not feasible.

There have been some amazing leaps in technology that have been a wonderful resource for the low vision.  There was a time (and still is for some) when people carried around several different tools to help them in their everyday life to help with low vision.  Now with the onslaught of iPhones and smartphones, these devices are able to do the job of a whole conglomeration of assistive tools.  Which is wonderful, however, it comes with a pretty hefty price tag.

I think what gets me down about it is that for a lot of people having a Smartphone is either for work or because it is cool to have, AND they have the disposable income to justify the cost.  However, living on a budget and trying to keep cost at a minimum, it is really hard to justify a Smartphone that costs to the tune of $200/month just so one could have all the bells and whistles that helps the low vision.   

I have always had to pay for really good health insurance, with a big price tag because I absolutely have to make sure that my eye disease and its treatments are covered.  When there are treatments out there that for just the drug alone can run almost 3K per dose, you can’t skimp on insurance.  When I had PDT treatments we had to pay upfront some $2800 and hope that the insurance would reimburse.  Luckily, our insurance at the time did reimburse and we got the money back.  However, who knows when the day will come that the treatment falls outside of plan benefits and then things will get ugly. Luckily right now Avastin is working and costs only $50/dose.  However, when the day comes it stops we are looking at all alternative drugs running close to 3K per dose. 

The bummer is I have a rare disease that isn’t really even acknowledged let alone recognized, so it is easy for insurance to say “not covered”.  Whereas a condition like Age Related Macular Degeneration (AMD) is widespread, recognized, and heavily covered. We can’t really have all our retirees going blind because they are on a fixed income and can’t afford treatments.  But for that 0.7% of us who have POHS there just isn’t the volume of a collective voice that could get the insurance companies attention.

I hear of folks paying exorbitant prices for medication, treatment, and doctor visits.  Others pay steeply for insurance.  There are times when I look at my CCTV and think, wow I could have gone to the Bahamas for that price. Unless I don’t want to be able to do basic tasks and get trained up so that one day I could reenter the work force, the Bahamas will just have to wait. 

Free at last, free at last

I am happy and breathing again.  Last week I had the culmination of all the work I have done and two years of waiting to take the ultimate acid test for my low vision.  I received my much awaited letter from the DMV to get my license renewed with all the appropriate restrictions in place.  I have two OT’s and tons of family and friends that believed that I would pass with flying colors.  I figured I would pass, but knowing you are going to pass and have passed is two totally and I mean TOTALLY different realities.  I had to take a written and a behind the wheel driving test.  The morning I chose to go spend the day at the DMV it had snowed three inches the night before.  Then as I drove into the DMV my “low tire” light came on because my hubby had made sure my tires were at correct pressure.  (On the DMV website it says that the people administering your behind the wheel test will make sure all lights are working and that there are no low tires.) So after figuring out how to reset the tire light I was actually on my way.  

Considering the reputation of the DMV –long lines and long waits—it wasn’t too bad.  My number was the 3^rd to be called and I was on my way to getting my new restricted license. Thankfully because of the documentation submitted on my behalf, I didn’t have to do the “vision” test. The written test was pretty intuitive and I passed just fine.  It was the “behind the wheel” test I was concerned about.

The behind the wheel test only took about 10-15 minutes.  It was really basic driving.  I had to navigate several different intersections, turn left and right and do lane changes and that was pretty much it.  Oh, I did have to basically just do whatever I was told to do.  Really all that matters is I passed. Big SIGH, I passed.

Now all the action items in my life that I had put onto the back burner can now be addressed because I know now that I can drive.