Your company and your insurance

This is a post all about insurance and what you need to know about autism coverage.  I have a friend, Tiffany, who has an autistic son.  She is fighting with her insurance and her company to get her sons ABA therapy covered.  She gave me a lot of information that may help you out there.  You may want to look up if your state has laws stating that autism and treatment must be covered.  You can find this at http://www.ncsl.gov/ and then in the search engine type “autism and insurance coverage state laws”.  Then scroll down to your state.  Once you see if your state has a law, then you want to check if your company is self funded or fully funded and you can look up the differences at http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.feathouston.org%2Fresources%2Fhow-do-i-access-aba%2Finsurance&h=xAQBa3CZf  Basically what she told me was “Self funded means the company has a pool of money that the claims are paid from. There is what is called a stop loss coverage that protects these companies from a very large medical claim. You can call the company and see if they opted for a stop loss plan. Then ask have you met that stop loss. It is worth a try. Once you are over the stop loss then the company can file the claim to that stop loss carrier which is mandated by the state law to cover autism therapy.”  Also, self funded insurances do not have to abide by the state laws only the labor laws.  Fully funded insurances do have to abide by the law.  In addition individual plans, at least in the state of Texas, do not have to cover autistic children.  Also, my friend told me that if you want to appeal to your company to cover autism you can contact autism speaks.  They have a presentation that basically shows that early treatment now will save the company tons of money in medical (not behavioral) expenses later on.  The good thing about a self funded company is that the company has the choice to add coverage to their plan.  Obviously no company wants to because it is more expensive, but sometimes I have heard that a letter to HR could work.  We (my husband and I) have decided not to appeal to his company.  We asked and they did not cover it and we believe it is because it was too expensive.  We feel very blessed and very fortunate to have a great job that my husband is good at and loves.  He loves his coworkers and I believe that if its possible in the future they may cover behavioral health, but until then we are on our own.  The crazy thing is that autism is effecting 1 in 110 (every site has different numbers) kids and this is still an issue.  I hurt for Tiffany who is fighting this.  Tiffany's son also has hemophelia.  That condition has the highest cost of any other childhood illness.  All she wants is therapy for her son.  She told me after she fights for ABA therapy to be covered she is then appealing for speech therapy.  Can you even imagine having an autistic child with hemophelia and the stresses of an appeal?  Please pray for her and all of us with no coverage.  Pray for the children mostly, because they are the ones suffering.  It is outrageous that we not only have to deal with a child with autism, but to also have to fight the insurance companies, and all the money problems, ect.... So good luck out there to all of you fighting this battle.  I know it is so stressful and painful, but I encourage you to turn to the Lord in times like this.  That is the only reason why I am still smiling.  Remember you are not alone.  There are many seminars you can attend to learn some basics of therapy yourself.  While I know that isn't as good as the "real thing" its a start.  Thats where we are starting.  We have been offered help from some amazing, smart women who are giving advise and even using their skills to try and help Jacob.  I am reading books on different therapies to get educated on how to handle him.  There are also ABA consultants that can come to your home to teach you how to start a program at home.  Its still expensive, but much cheaper than sending them to a clinic for therapy.  I am trying to contact a few people regarding that as well.  Lastly, you always have the option of trying to find a job that has group coverage.  Make sure it is a company that has fully funded group insurance and try to get covered.  In 2010 national law was passed that no child may be turned down due to pre existing conditions so your child should get coverage.  With all that said I ask, plead for you to pray for all the families with no insurance and also to say a special prayer for Tiffany and her son Wesley. 

For it is you who light my lamp; the LORD my God lightens my darkness.  For by you I can run against a troop, and by my God I can leap over a wall.  This God-his way is perfect; the word of the LORD proves true; he is a shield for all those who take refuge in him. Psalm 18:28-30

Walk Now for Autism Speaks: Houston!

Well I took the first step....I set up a team for the Autism Walk.  If you feel led to donate, anything would be appreciated.  Even a dollar gets us closer to a cure.  The shirts are $15 each or you can purchase them for $20 and the extra $5 will go towards the walk.  Just email me for info.  Our team website to donate in Jacobs name is http://www.walknowforautismspeaks.org/houston/jacobhill  All of the money you donate will go directly to autism speaks research.  I feel so excited to be a part of something bigger than our family and something that will help more children than just Jacob.  At this point we can't really afford to get the kind of help we need for Jacob, but we can try to get funds for this foundation.  I hope you join us by donating or through prayer. 

The Ups and Downs

I started a post last night talking about how having a child with a disability is such a rollercoaster.  Only the day before I was laughing and singing and posting about praising the Lord.  Then yesterday my world came crashing down.  Thats what being a parent of child with a disability is like.  A rollercoaster.  Crazy happy hopeful days and long stressful defeating days.  I was probably having the hardest day yet in this journey with Jacob.  The worst part about it was that I didn't know if it was even ok for me to be feeling sad and hurt and angry so that made me feel guilty.  We officially lost the battle with the insurance company yesterday.  Even with the neurologist on our side and her nurse looking into our coverage all day, the insurance finally said that they just weren't going to cover the tests.  Not only that, but the therapies we need won't be covered either.  In addition, I found out that $1200 per month only covers 10 hours a week of ABA therapy and most kids need 20-30 hours if they aren't in a school program and thats only 1 type of therapy they need.  They also need speech, occupational, special diets and sometimes medications.  Lastly, Jacob got sick again.  he had fever and the entire night his nose was stopped up and instead of finally realizing he needed to breath out of his mouth he would hold his breath, then gasp for air and then cry and cry.  This went on for hours.  I was really torn down.  I couldn't imagine anything worse than knowing you have a sick child and not being able to take care of them or give them what they need.  I am and was heartbroken.  But then I got a call from a lady who is on the board of a diabetes foundation.  She was telling me that she knew someone within the autism speaks houston chapter and gave me some info.  She told me that she knows how hard this is for me.  She said she gets calls from people who have lost their insurance and have no insulin for their children.  If these kids don't get insulin daily....they die.  Woah.  Here I am thinking nothing could be worse than my situation and I hear about these parents who now have to go to the emergency room every single day to get their kids insulin to keep them alive.  She then said that there were parents who chose to give their kids to the state just to keep them alive.  My heart is breaking for these people.  And while I won't dismiss the seriousness of my situation and I am going to allow myself bad days, I can't help but to see God giving me the proper perspective right now.  I know how hard this is for me, so I am only feeling a fraction of the difficulty of those parents.  So after I hung up I deleted my post that was a huge pitty party and sob story and just prayed. 
    
    God, please keep giving me the right perspective on this.  Help me fight this and help me give other parents a voice.  One way or another I need to make a difference.  Help me to make a difference in the world of autism and ultimately for your kingdom. Amen. 

After that I looked up on the autism speaks web site and found info on a walk to raise money for research going on in October in Houston.  I wanna do it.  I wanna raise money.  I don't want to just figure out how to get help for Jakey, I want to help every kid with this terrible diagnosis.  So now I need to pray for the right people to help me raise some money for this event.  They gave ideas such as a car wash, dinner, or even a lemonade stand to raise money for the walk.  I am already overwhelmed with everything, so I think I may do something small like a car wash, there has to be people out there that would donate for this wonderful research.  I am overwhelmed by the hundreds of people that have already viewed my blog and emailed me and what that tells me is that people are interested in autism.  It affects millions of babies.  It may already affect you or a loved one.  So I am praying for answers to what my role will be in this.  As far as practical advise for parents with kids with autism....I have decided to start a medical journal.  Many of you probably already have.  I want to take Jacobs temp and write his syptoms every day.  As I go through therapies and treatments I will continue to blog what helps us, although I know each child is different and needs different treatments.  I am still considering Doctor Goldberg at UCLA.  If anyone has more info on him I would greatly appreciate it.

Today is the day

I decided I was going to blog this.  I'm beginning to feel like every day is going to be a struggle to stay positive and keep going.  I don’t have any new info on our insurance.  Nothing dramatic happened with Jacob today.  This is just something that is helping me get through today.  It may not work for tomorrow, but for now it is giving me joy.  My day started out as usual:  Jacob crying in the wee hours of morning, getting him up and changing his diaper while fighting with him to not eat our Pier 1 velvet pillow on our couch.  I really need to throw those velvet pillows away.  I can’t put Jakey near them without him trying to suffocate his face in them.  Then after I changed Ty and gave him food, we went to the table and I started to feed Jacob his yogurt and after two bites I had  to physically squish his cheeks to open his mouth to get him to eat…All this while he was frantically throwing his arms around to avoid taking bites.  Then I loaded the boys in the car and headed to my moms to give Jordan the clothes I forgot to leave.  On the way home I hear a song with the lyrics, “Today is the day You have made, I will rejoice and be glad in it.”  I started thinking about it.  Have I been rejoicing in the Lord?  Have I been rejoicing in anything?  Yes, I have been praying like crazy but I’m sad, lonely, and scared.  So I look up the verse in my Bible and read it and then reread it.  “This is the day that the LORD has made; let us rejoice and be glad in it.” Psalm 118:24….So I have decided today to not complain, to not worry about our circumstance, to keep praying with hope, and to rejoice and praise the Lord.  And you know what?  So far It’s been working.  I’m happier and I am getting more accomplished.  Will this work tomorrow?  I don’t know, but I’m going to try.  So I’ll share these lyrics with you and I hope you read them and have peace and joy…

I'm casting my cares aside
I'm leaving my past behind
I'm setting my heart and mind on You, Jesus

I'm reaching my hand to Yours
Believing there's so much more
Knowing that all You have in store for me is good, it's good

Today is the day You have made
I will rejoice and be glad in it
Today is the day You have made
I will rejoice and be glad in it
And I won't worry about tomorrow
I'm trusting in what You say
Today is the day
Today is the day

I'm putting my fears aside
I'm leaving my doubts behind
I'm giving my hopes and dreams to You, Jesus

I'm reaching my hands to Yours
Believing there's so much more
Knowing that all You have in store for me is good, it's good

I will stand upon Your truth
(I will stand upon Your truth)
And all my days I'll live for You
(And all my days I'll live for You)   

Lincoln Brewster

To hear it visit:  http://www.youtube.com/watch?v=nf6kPsDm7B0

Praying for a miracle...

I probably won't always be blogging this much, but since this is the beginning I want to write down every issue.  I know this is a common issue with all autistic parents so... This morning I got the call from the head insurance lady for my husbands company.  I was told that our insurance does not cover anything for autistic children.  No treatment, no therapy, no testing.  I started crying on the phone with her and I could tell it was not easy for her to tell me.  I'm kind of at a loss of words....Just the 2 basic tests I need right away are $8000.  His neurologist also prescribed ABA therapy, which is the only thing with clinical research and statistics that prove it helps autism and that therapy is $1200 per month.  Thats a house payment.  Not sure what to do or how to feel.  My friend told me that we could apply for disability.  She said autism is considered a disability.  I think I will look into that.  For now, we have put our house for sale and are planning on moving in with my mom.  You can't be prideful when it comes to the health of your children.  We aren't planning on staying there forever, but for the next few months we need to be able to afford all the testing and therapy we can.  Funny how God can humble you.  The girl who loves stuff has to give it up.  I'm so sad and worried about the future and what it holds for our family and Jacob.  I do know that when things like this happen its a chance for God to change our hearts and make us better.  I read somewhere that trials are not enemies of faith, but chances to prove our faithfulness to God.  I'm thankful to know that God is working on me and my heart.  This is no surprise to God, so I'm just praying for a miracle. 

Cret taking it all in...

It's been months since I told Cret that I thought Jacob was autistic.  At first he told me that he didn't agree.  Later, he said that if Jacob is autistic we were just going to work really hard and help him.  No matter what he has said about it, its been positive and loving.  Cret is what I like to call a "manly" man.  Not a lot of emotions, just strong and work oriented.  Last night, however, I had him read my blog.  I had downloaded pictures and he read every single post to the beginning.  Then something amazing happened....He cried.  He cried for one of the first times in our marriage.  I think the last time I saw him cry was right before our wedding when my sister lead him to Christ.  So I am just standing there, feeling like I want to jump up and down because it finally seems like we are on the same page, but obviously not doing that because that would be scary and a little awkward.  So I gave him a hug and asked him why he was crying and he just said, "Jacob."  I didn't know what to say.  I wanted to be a girl and say..."What about Jacob?" "Which part made you sad?" But I restrained myself because I didn't want this to be the last time he'd ever cry.  The reason I'm writing this is because as a woman, I want to be able to share everything about my feelings with my husband and I want him to understand everything that I'm feeling.  But God made us different.  God didn't make Cret a super emotional crier like He made me.  So what do you do when you feel like your husband doesn't understand?  I don't have all the answers to that, but what I do know is that you communicate what you can to your husband and then you find a friend or support group or blog that you can write about it.  Get some clarity.  Reread your thoughts so you can change your thinking in alignment with God if you see that you are heading the wrong way or write them to get your thoughts out.  When I feel like crying for hours, I start reading a mommy blog or writing my own and I feel better.  Of course I turn to my Father in hard times too and pray.  Who better can understand our sadness than God, who sent His son to die a brutal- death for us?  When I think about that, when I read about how Jesus suffered, my pain doesn't seem so bad.  Actually it makes me thankful.  I'm trying to keep a thankful heart through all of this.  Even when I'm crying my eyes out and Cret is looking at me like I'm a basket case, I am trying to stay thankful for him and my kids and for God.  God is so awesome.

The Insurance Crisis Begins

I have read many stories about families of autistic children that have lost their homes, huge families living in tiny apartments just to afford treatment for their children with autism.  They say the average family spends $100,000 on an autistic childs therapy and health.  Autism is generally considered a behavioral disorder and because of this most insurances don't cover treatment.  Even when people, like us, have behavioral health coverage most of these specific treatments are not covered.  Even though I have read that and even explained to people that most things probably wouldn't be covered, I never expected it to start so soon.  We just got his diagnosis yesterday and already we are denied coverage today.  Our neurologist ordered genetic testing and an MRI.  She said the purpose of these tests were to make sure that his autism wasn't caused by a genetic disease such as fragile x, ect.  The MRI will tell if there are any abnormalities in his brain.  Why isn't this covered?  What in the heck is the deal?  I am feeling so discouraged.  We drove all the way out to Texas Childrens and didn't get to do the blood work.  The scariest thing of all , though, is that even with just our high deductables we have had to make some serious sacrifices to be able to afford medical bills.  I have no idea where we go from here.  With no coverage we will be seriously limited to what we can even do for him.  That is not acceptable.  I will fight this. I will get him help.  The Lord knows whats happening and I will trust that He will guide me.  I have to constantly fight the urge to cry.  The only time I am even thinking clearly is when I type these things out and hear my thoughts.  I need to focus and lean on Him who gives me strength. 
Lord,
  Thank you for all that you've given me.  Thank you for being holy and just.  Thank you for giving me this autistic child and thank you for the opportunity to live out my faith.  Help me to stay encouraged as this is only the beginning of the long journey I have with this illness.  Heal my baby and help me raise him to honor you.
Amen