Shortly after our youngest son turned three he was diagnosed with Apraxia of Speech. We had just moved from overseas to Ohio about six months prior, and I had been working hard to get Peter referrals from our medical care on base so I could take him to specialist after specialist to have his hearing checked and his ears checked and his speech assessed …. because he “spoke” completely unintelligibly.
Fast forward two years and many, many therapy sessions later, Peter’s progress is nothing short of miraculous. He “graduated” from private speech therapy several months ago, and we recently attended his final session of private occupational therapy. He has simply met all of his goals appropriate for his developmental age. He still has a current IEP with his preschool, but I won’t be surprised if that is closed out at the end of the year.
What is Apraxia?
Apraxia of Speech is a neurological disorder that affects the communication between the brain and the muscles that we use to talk. (Did you know that the palate alone is comprised of some nine different muscles?) There’s nothing wrong with the brain, and there’s nothing wrong with the muscles. There’s simply a breakdown in communication between the two.
I’ve used dyslexia to help explain apraxia. (Indeed, apraxic children often tend to be dyslexic as well.) For someone with dyslexia struggling to read, it’s not a problem with their vision, and it’s not a problem with their knowing their letters: their brain just needs to be trained to see the letters the way they are sequenced within a word. “Giving them time” isn’t going to cut it; dyslexia requires special intervention to overcome.
So it is with apraxia of speech. I couldn’t count how many times we were told “he just needs more time” or “he’ll just outgrow it”. And by well-meaning people, too, because they’re trying to understand it themselves and they want to be reassuring. Everyone has a story of a child they knew who didn’t talk until later than anyone else, then one day he opened his mouth and it all came pouring out. I know quite a few of those myself.
But that wasn’t Peter. For one thing, he “talked” all the time — you just couldn’t understand him. As much as I wanted to believe that he was just a late talker or that he would start speaking intelligibly if just given enough time, I knew what he was doing wasn’t normal or in anyway typical for a child his age.
Ultimately, we learned that the curious way he “talked” while his mouth was closed was called velopharyngeal incompetency. That’s a fancy way of saying that his palate didn’t like to touch the back of his throat — though it was perfectly capable of doing so, mind you. He could make the hard “G” sound, for instance. But when speaking, most of his utterances were lost up in his nasal cavity.
What Does This Have to Do With This Blog?
I’ve often mused on the further impact Peter’s disorder would have had if we had not had insurance to cover the various doctors’ appointments and many therapy sessions. Learning and dealing with the diagnosis was difficult enough emotionally; imagine if we’d had to struggle financially as well?
Many, many parents whose children have special needs are in the position of having to choose to get the treatment their child needs even though it means going into debt to do so. Therapy sessions can run from (at least) $40 to one 30 minute speech session to over $100 for one hour of occupational therapy. Often, even with insurance, the co-pays can become a financial burden. A $10 co-pay per therapy session is common, but some may be up to $30 per session (and higher?). This can add up if your child needs private speech therapy, occupational therapy, physical therapy, etc…. Every single week.
We were so fortunate that our Tri-Care insurance covered everything. Yes, it took some work to get the appointments for the referrals we needed: When you don’t know what is wrong with your son (I had never heard of Apraxia before) you don’t know what questions to even ask to get to the right person who can help you, and you’re at the mercy of your primary care provider. It takes some trial and error and a lot of tenacity. But once we finally got to the doctors and specialists who could help Peter, we didn’t have to wonder how we were going to pay for it.
This Is Not About Healthcare
I am not trying to make a statement about the current Healthcare Bill that is getting made into Law as we speak. (Although I would have plenty to say if I were, believe me you.) (That would be an entirely different post of its own.) (And possibly a different blog as well.)
I’m simply eternally gratefully that our Peter is not only progressing so well that professionals meeting him for the first time can’t even believe his original diagnosis of apraxia was even correct (ahem) but also that we are not suffering financial repercussions of the literally hundreds of therapy hours that helped him reach this stage. As many of you reading could probably attest, not every parent of a special needs’ child is so fortunate.
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I am SO thankful for our tricare coverage. Our son was diagnosed with Autism and a 50% global developmental delay at 21 months. He’s almost two and a half and is hasn’t said his first word yet.
Right now he’s getting speech and OT from the city early intervention program and getting six hours of behavioral therapy every week. The behavioral therapy alone would cost us almost $3000 every month. Instead, we pay $25. Most other insurance companies don’t cover the behavioral that all.
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We also are fortunate to currently qualify for a program in California that covers the bulk of our daughter’s medical bills. My daughter has cystic fibrosis. One, just one, of my daughter’s 20 medications had a co-pay of $1200…(for a special inhaled antibiotic) we paid it only once and then sought help. We would be bankrupt without this program.
So glad your sweet son is doing so well, good health is a blessing.
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Kudos to all you moms who advocate for your child, fight to get referrals, take time to research sources of help etc. Many don’t, and then say their insurance doesn’t cover it or they couldn’t fiind help any where. I know it’s very hard work, but you are to be lauded for making your child a priority.
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Thank you for putting that “out there”. My Middle child has had to do PT/OT due to low muscle tone. We are so Grateful Tri Care covered all the cost unlike my SIL and BIL who almost lost their home due to costs from co pays and not covered expenses. Do we wait a little longer to get referred or feel like we must make phone call after phone call? Sure but it was worth it….we got top notch care and never paid a dime out of pocket. Thanks again.
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jolyn Reply:
March 24th, 2010 at 11:18 pm
I feel the same way. You have to be on top of advocating for your child, and maybe you have to fight a little harder to get referrals. But oh so grateful that the cost is not out-of-pocket.
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I’m so glad your son is doing well! It’s very encouraging for me to hear, especially since my son is in speech therapy now too. Nikki is right. Some states do offer free programs for children with special needs. It just takes a lot of research to find what you need. Regardless of insurance status, I strongly believe that all children with special needs should be able to receive the care that they need and their parents shouldn’t go bankrupt because of it.
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Hi,
I am a preschool speech-language pathologist, and have worked in public school settings for the past 12 years. I always encourage people to inquire with their local public school system or state Early Intervention Program. Evaluations are free, and if students qualify for services, therapy is free as well. This includes all children residing in that district–not just those who attend public school. Services can include developmental or resource teachers, speech therapy, OT, and PT. We have separate eligibility guidelines than medical/outpatient rehab services, but treatment is typically similar. Some of our parents choose to pursue outside therapies in conjunction with ours, and pay through state assistance, private insurance, etc. Some United Way agencies around the country offer therapies as well, and this may be based on a sliding scale. We also have several grant funded and nonprofit groups in the area that people can apply to for assistance with special needs children with various disabilities. I know it is tough out there financially, but do some networking. There may be more available than you think.
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This is awesome news…. It must be hard and frustrating for him knowing what he wants the world to hear and the world not hearing him…. Could it be helpful for him and children like him to learn sign language as a second form of expression… Communication is about so much more than speech.
Anyway I am thankful your son is doing so great and your insurance has been good to you. I come from UK so have been blessed with care for whatever I needed all my life.
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It is great to hear about your ability to pay for these services and your son’s improvements. It breaks my heart to hear about the many cases, which aren’t so fortunate to have insurance coverage that is both affordable and provides needed services.
During a financial crisis in my early 30s, my insurance card was the most important piece of plastic in my wallet during those first three years of my late husband’s stroke. Then, Medicare was golden. We have a lot of gaps in the system and I don’t know what we would have done without utilizing VA benefits and private insurance. It was rocky and scary at times, but we were blessed.
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As you may know, Bossy Boy is highly special needs, between his medical needs, prematurity effects, and Autism. We have had him in private OT 1x a week for 4 years now. I never added up the total co-pays until now….but…..it is roughly $3300. Just for the co-pay. This doesn’t account for all the other stuff.
I am so thankful that we have insurance. And while we have had some bumps and bruises with them over time, they have thankfully been worked out (mostly in our favor).
Oh, and his feeding tube….we have a financial waver with the company for that. Otherwise…that bad boy would cost us about $400 a month (and he has had it for over 7 years). Without that waiver, we would have spent $33,600 just to feed him!!!
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I’m glad he was able to get the therapy he needed without your finances having to take a nosedive. I wish ALL children could have this. My husband and I pay over $400 a month for insurance, yet we had to stop therapy sessions (speech and OT) for our son because just with us paying 20% we have accumulated over $3000 in medical bills for our son. He’s about to receive another diagnosis which will require even more therapy and I am so upset because he doesn’t qualify for any assistance (apparently, we “make too much money”, yet we have nothing for extras and are having as heck of a time paying these bills off. It just stinks, and I’m sorry I’m ranting here…I just wish all children could get the help they so desperately need. We’ve thought of dropping insurance and just paying for office visits with the $400 we’d save a month, but as soon as we do something catatrophic would happen. I just don’t understand how this has happened to our family. We work hard.
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