*Note to all my awesome supportive friends out there: Thank you for all the encouragement to start writing this blog again. Being new to this arena, I did not know to save my writing elsewhere in case (Shocker!) a database replication failed on blogger.com and they could lose my entire blog! I will say I was heart broken that my blog posts were lost and deeply discouraged. However, many people have told me they enjoyed what I did write, were inspired by it, couldn't believe what happened during Joseph's birth, etc, so I have decided to continue to write.
I'm not sure I'll go back and rewrite the first posts, but who knows....so here goes again...
This week Joseph had a visit with his Physiatrist, aka Physical Medicine doctor. These visits are supposed to be quarterly, but I usually forget to schedule an appointment and they end up less frequent than that. So what was the point of this visit? Well…to check on the progression of Joseph’s cerebral palsy and the physical effects it has on his body basically. Cerebral Palsy is defined as a non-progressive condition, but in J’s case, as in many others, you see a decrease in range of motion in limbs and increase in muscle spasticity and tightness.
Remember, Joseph cannot move much on his own independently, so he’s prone to things like tendon and muscle contracture, scoliosis, pressure sores, etc. The latest diagnosis for Joseph’s cerebral palsy is Spastic Quadriplegic, meaning all four of his limbs are affected by the condition. Some kids only have upper or lower body involvement, he had both. Combine that with very low tone in his trunk and you have quite a handful. SOT: picking up Joseph is one of the weirdest sensations…some have referred to it as pulling apart a Stretch Armstrong doll. He has little to no tone in his trunk and when you pick him up, there is no abdominal or core bracing like you might feel with another child, so he just stretches.
So back to Joseph’s appointment with the PM doctor. We discussed any changes in Joseph’s physical activity since his last visit, which was when he had Botox injections in his hamstrings and hip adductors. I’ve noticed that J wasn’t walking in his gait trainer for the last few months too. Discussion ensued about whether or not J acted like he was in pain, or if his gait trainer needed adjusted, if he was being motivated to walk. Our conclusion: It’s a choice. J just doesn’t want to walk right now. Usual motivators were not working, he wasn’t screaming like he was in pain with his sub-luxed hip, and the adjustments on the gait trainer didn’t matter. So for the last two months, when we’ve put Joseph in his gait trainer, we honestly do believe he just doesn’t feel like walking. He will STAND there for upwards of an hour, watching Sponge Bob or some other cartoon…but forget walking.
At this week’s appointment I also said it’s time for a new stander. Joseph currently has a size Small Rifton Prone Stander, and has pretty much outgrown it. Why do we need this piece of equipment? Because of his severe Cerebral Palsy and Hypoxic Ischemic Encephalopathy (HIE), Joseph cannot walk or stand independently. Walking and standing are important weight bearing activities to proper bone formation and growth. Joseph’s physical therapist has recommended he stand and weight bear for at least 3 hours a day to maintain this bone growth, else risk developing osteoporosis. The doctor wrote the prescription for me to get a new stander and I mentally prepared myself for the idiocy that I was about to face.
A few days later after I decided to call the insurance company, United Health Care, to check on benefits eligibility for Durable Medical Equipment and to see what coverage was for the stander. When I finally was able to talk to a person after multiple button pressing, I told her I would like to know what coverage was for this piece of equipment. Her first response: “what’s a stander? I am not medically trained.” Of course you aren’t, that wouldn’t make sense. “What does this piece of equipment do?” she asked. “It allows him to stand supported.” I responded calmly. “Do you have an ICD code?” she replied. “No, I do not have an ICD code.” I said. I thought to myself, why the hell would I have an ICD code? “I have a prescription from the doctor that says Stander” I told her. “Okay, I have no idea what that is so let me try to search for something in our system that’s close.” she told me.
I knew there was some coverage for the Stander but just wasn’t sure how much and what providers were in network. My kids' health insurance company switched to UHC the first of the year and I am not as familiar with their systems as I was when we had Kaiser Permanente for the last 10 years. I was trying to think of how to get off the phone with this lady because she was not going to be able to answer my question but I did need to find out who their Durable Medical Equipment Providers were. So I asked “what is the benefit for Durable Medical Equipment and what is the coverage for in-network vs out of network, and can I have the names of a few of your providers in-network?” That was finally a question she could answer and I took down the information, thanked her and then started an online search for the providers she gave me.
In-Network coverage included a $150 deductable then coverage of 80%, Out-of-Network provider was $600 deductable and then 60% coverage. Note: she only gave me ONE “In-Network Provider” to contact.
The first one was Apria, and I thought, oh, they provide Joseph’s enteral nutrition supplies, that would be great if they could also provide his stander. I called them and explained I had a prescription for a stander and wanted to see if they could help me get my son this equipment. The first thing the lady asked “what is a stander?” Sigh…I breathed deeply and calmly explained to her what it was. “I need to go check with my manager if we carry those, can you hold please?” she said. “Sure” At this point I knew they didn’t have them so I was already thinking of plan B. She came back on the line and explained “the stander falls under rehabilitative equipment and we do not carry it”.
My next choice was to go to an out of Network Provider that the UHC employee didn’t mention, but we have used ever since Joseph was 3. After verifying Joseph’s account information and insurance changes, the woman on the phone said, “yes, we can help you with that. Just fax over the prescription and we’ll start the process.” Whew. Finally! A bite! This is only the first step though. Now I wait for days or weeks until the equipment company decides to call me and discuss what we need. Then I’ll wait another week or so to get an appointment for them to measure Joseph for the correct size. IF we are lucky, they will come out to the house and I won’t have to travel to Alexandria, VA to do the measurements. Then we’ll have to wait another month or so for the stander to be ordered and delivered to their shop, and then another one to two weeks to have it delivered to our house, if we are lucky. So I figure by the time Halloween comes around, Joseph will have his new stander.
Next week I plan to call the equipment company to prod them along with the prescription…I can’t wait to see how much fun this is!
