Speaking Up

I'm just taking a moment before Avery's speech therapist arrives to post, because I haven't been the most regular in my blogging lately.  2013 is shaping up to be an interesting year.  It's funny how when you're young, you imagine that when you're finally an adult at the ripe ole' age of 31, life will be smooth and make so much sense, and decisions will be so clear to make.  Reality check.  Not true!  At least for this gal!  It seems like there's this life that I've envisioned and then there's this one I'm living.  Don't get me wrong; I enjoy my life, and I'm blessed in ways beyond what I ever imagined!  But there's doors that seem to be cracking open that I didn't anticipate and others slammed shut that I thought for sure were right for my family and me. 

Right now we're fighting a "battle" if you will, with Avery's insurance coverage.  Phillip and I started off as a married couple with very little.  Our new home literally had mattresses on the floor, an old cedar bed set in the spare room, an outdated stereo that belonged to his parents, a hand-me-down computer, and a Christmas tree.  We both worked hard and tried to make wise decisions with our money.  I finished college and worked full time five years until I had Avery.  Phillip went back to school and made a career change simply so that he could have a steady income and insurance and I'd be able to stay home with the kids.  We never bought flashy cars or took big vacations.  We lived within, and most of the time, below our means, remodeling horrifying-ly dirty foreclosed houses and made them our homes so that we could build equity in each one.  The Lord has blessed us, and we have met some of our goals...others have been modified along the way.  Now it seems like all of these "wise" choices are backfiring on us, as we're coming to understand the realities of government and healthcare. 

We've had to tighten our belt over the last couple of years as I have quit working, and only teach occasionally part-time.  Phillip's job, like many others, has changed leaving him with lower pay, fewer hours, higher insurance premiums and deductibles, leading to a much smaller take-home pay.  I'm not complaining.  His work has been so flexible with him dealing with Avery's health issues, and we have had to make do  like many other Americans, cut out the extras, and we live a comfortable life because we thankfully avoided accumulating mountains of debt over the years.  Yeah, I shop off of clearance racks and second-hand stores, I drive a minivan, and Phillip has an older model truck.  But seriously, I'm happy to do it!

The problem is that Avery's medical care isn't like the normal person who may have a health issue a couple of times a year that requires medical attention or even hospitalization.  Those kinds of things can be dealt with.  A co-pay on one or two monthly medications isn't unreasonable.  However, Avery takes at least seven monthly medications (down from about 15), he is fed strictly by g-tube, and each can of formula is $43, his leg braces that he outgrows yearly cost a couple thousand dollars, his wheelchair we picked was cheap at $2500, his walker is about $3500, he has eye surgeries nearly monthly, blood work regularly that sometimes leads to expensive infusions depending on his counts, not to mention the weekly therapy sessions.  When our primary insurance only wants to pay 80% (sometimes less) for expensive medical equipment, and we have high deductibles and co pays in different categories, medical bills could pile up quickly.  I have to say we have been SO blessed with insurance coverage in the last year or two.  But Avery's health care is going to be a life-long issue, and our "wise" choices in the past are backfiring on us now.  We've been denied disability for Avery because of our assets.  (We don't have that much, but the limit is $2000 total, including housing/cars/bank accounts).  We've considered giving up our home, renting, and re-allocating our other assets, but giving up what we've worked so hard to have seems really wrong.

The good news is that yesterday I spoke to someone through the Board of Developmental Disabilities giving me an update on our Medicaid Waiver that we applied for a year ago.  We've been on a waiting list that is about 2-3 years long.  We were moved up based on Avery's need priority from number 1200 to number 21, and yesterday we were assigned a case worker.  A waiver for Avery would mean that he would have medicaid insurance that isn't income based or based on his parents' assets.  It would also allow him to have some nursing care/respite care at home so that if I wanted to go to the grocery store during the day when Phillip is at work, I might actually be able to do that.  This would be a HUGE relief for us because we've felt very trapped recently trying to hold onto as much insurance coverage for Avery as we can.  The downside is that these waivers are state based, and we have prayed about and considered moving to a different state.  If we chose to do that, it would be completely on faith, because we would have to start all over waiting who-knows-how many years to get Avery specialized insurance, and in that amount of time, we could be forced to live in a cardboard box.  Not really :-), but you get the point!

So that's what's been on my mind today...and actually a lot of days recently.  We want to be able to go wherever God wants us and do whatever God wants us to do.  I've teased Phillip that I'm ready for my mudhut in Africa now, but seriously, we're that willing.  But as you can see, we also feel very torn between trying to be smart and keep our son near his medical providers and in a place where his medical care can be paid for and having faith that God will provide.  If you think of us, pray that God will lead us.  As I mentioned, it seems like there are some doors creaking open that I never anticipated, and we want to make the right decisions.

I've learned that children with special needs are an incredibly under-represented group in many ways.  The more I learn about how our system works, the more frustrated I get.  I'm trying hard as a mom to be an advocate for my son and make his voice heard.  It's definitely a battle, but he's so worth it! 

Bethany