“You don’t know what you don’t know.“  Most people have heard a similar saying before.  We hear people say you should always keep learning.  When we are younger, we often think we know everything we need to know about life.  As we age, though, we realize that there is so much more to learn.  Whether it’s learning something new about your favorite sports team, your city, your vehicle, your neighbor, a health condition, a financial resource, or just a fun fact about something silly, we continue to learn every day.  People with disabilities are no different—in fact, it sometimes seems like we are forced to find out more information and figure complicated situations out more than the average person.

My parents and I used to consider ourselves pretty educated people when it came to navigating the whole “disability system.”  My mom worked in the special education field for over 40 years, my sister is an occupational therapist, and I’ve been pretty active in disability advocacy for a few years now.  One would think given that combination we’d have a pretty good handle on how everything works and what resources are available.  However, that couldn’t be further from reality. 

In recent months, we have found ourselves wide-eyed with new information, but yet having to go to great lengths to find other information.  It’s not just about one thing either—it’s multiple issues.  Obviously, we had to learn and the long-term care system years ago even before I graduated college.  My parents and I met the local Aging and Disability Resource Center (ADRC) where we were explained and given the choice of two options—IRIS or Family Care. IRIS sounded like the best option for me.  I vaguely remember picking my consultant, but I don’t think it was ever explained that I had a choice of what IRIS Consultant Agency and Fiscal Employment Agency I wanted.  I’m almost embarrassed to admit this, but it was well over five years after I started in IRIS before I realized I had those options.  I may have missed the boat on that, but information wasn’t readily available either.  Then, when care issues started to arise years ago, my consultant gave us all the resources and explained all she could, but there wasn’t Information easily available.  Now, yes, I understand that I choose to self-direct everything and that’s part of it; however, it’s really had to do without knowing what’s available.  Furthermore, last fall, when I just wanted to learn more information about Family Care and ask questions, the ADRC wouldn’t even meet with me unless I enrolled.

Long-term care is just one example of where I find myself still learning the hoops.  A few months ago, I visited my Independent Living Center.  They have an accessible model house that has all sorts of assistive devices, so I wanted to see if they had anything I could benefit from.  It turns out I already have a lot of the things they had, but I was talking with the assistive technology specialist about accessing my computer.  He mentioned that I may want to try eye gaze.  I had tried it many years ago and didn’t like it, but he said technology has come a long ways and that I may want to try it.  He explained I could get it funded through the Telecommunications Equipment Purchase Program (TEPP).  I had never heard of it before.  It’s a program through Wisconsin Public Service that funds assistive telecommunications equipment for people with disabilities.  The rep from the eye gaze company came and did a demo a few months ago.  I was able to try it, and I was able to successfully use it.  It was actually really cool—I will be able to control my computer with just my eyes.  We’re just waiting for my TEPP application to be processed and then I’ll be getting the equipment.  Not knowing about TEPP, I’ve probably missed out on some assistive technology equipment that would have made life easier.  Again, I don’t know how people are supposed to know about these programs.

Health care is another area where information seems scarce.  As I’ve explained in a previous entry, I started seeing a rehabilitation doctor a few months ago.  My neuro team was shocked when I told them I didn’t have one.  The rehab doctor sort of oversees my medical care.  I left the first appointment feeling like this should have happened years ago—not because I’m thrilled with all these extra appointments I’ve had, but because it may have been helpful in treating or preventing some of the issues I had.   My sister later explained that rehab doctors are a relatively new concept, but I feel like my regular doctor should have referred me.  Again, how are people supposed to know these are available?

Recently, my parents and I have started trying to figure out how my benefits will change when their benefits change.  We’ve found out that there’s a lot of confusion about this and people are being very misinformed.  After my parents made several phone calls and I talked to friends with similar circumstances, we’ve kind of have an idea of what needs to happen.  There isn’t a person that guides you through it.

It’d be a huge understatement to say we’ve learned a lot in the last few years.  There’s truly not a road map on this journey.  I’m truly blessed that my parents and I have the cognitive capability to navigate this curvy road together.  I’ll continue to do everything in my power to help others do so as well! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.