Feb 11, 2013 0 Share

Birthday Wishes


Illustration of birthday presents with lit numeral candles indicating "18."
iStockphoto

In six short weeks, my son will have reached the age of 18. I cannot believe this day is upon us. It seems like just yesterday I was trying to assess whether or not this IEP I had been handed for my 4-year-old was really necessary. Thankfully I've long evolved from my Queen of Denial mode, but I really can't believe how fast Cameron has grown. 

But now, with the age of majority upon us, I feel as though I'm dreadfully behind. There are so many things that need to be decided and dealt with, yet none of them are much fun, or all that easy. I spent 35 minutes on hold last week with Social Security trying to set up an application appointment for SSI. If you don't know what SSI is, you're not alone. It stands for Supplemental Security Income and is a program which pays benefits to adults and children with disabilities that have limited income and resources. The assumption is that Cameron won't be able to support himself financially, and SSI is a way to fill in the gaps. I guess my goal, or my hope rather, is that Cameron will qualify for support in the short-term, and will be able to earn his way out of qualification in the long-term. I believe that Cameron's earning potential in its own right will keep him out of poverty. But this program will certainly help in the meantime, because Cameron is a long way from being able to earn the income he will need to be self-sufficient. 

So after a 35-minute hold, while I was simultaneously entering information on the Social Security Administration's website, I was told that the office we need to go to did not have their calendar available to schedule an appointment. Someone would call me back within a week, or if not, I should call back. (Being on hold for 35 minutes was so much fun the first time, why wouldn't I want to call back?) But just because it's a pain, I won't be discouraged. The website contains much valuable information and it's certainly worth the aggravation if benefits are available in the end. 

I was ahead of the game when it came to local vocational rehabilitation services. Cameron applied for these services through his school (but it took some prompting from my end to make this happen.) Cameron qualified for services with this agency, which will help with postsecondary programs and job skill training. 

What surprises me as I meet with other parents in the same situation of having a transitioning young adult with disabilities is how little we all know about how the process works. There are services out there, but there is no straightforward path to getting these services. At least, not that I've heard of. It really takes advocacy on behalf of the individual, whether by a parent, guardian, teacher, or some other interested party. Someone has to move the ball forward, because it will not move on its own. I personally believe the process should be easier and more automatic, but that's just not how it works in the real world. Since the day Cameron was born, I've known when his 18th birthday would be. So why do I feel so unprepared? Maybe my friend, the Queen of Denial, has been with me all along.