Fight for the right…. for therapy

It’s been a rocky week for me.  Processing another layer being added to our lives.

To lay the ground work- Landon sees one therapist here at home 6x a month and one therapist at MUSC in Charleston 2x a month.  We have been granted services (after two freaking months) through Babynet, which is the early intervention program in the state of SC.  It provides services for children under three years old, meaning the therapists bill insurance companies first and then Babynet picks up the tab on anything they will not cover or anything after they pay their portion.  After three… I’ve been told you can get services through the school system. 

The first MAJOR problem of the week is to learn that Babynet is SUCH a horrible mess in this state that hospitals and therapists all over the state are beginning to rapidly decide NOT to work with Babynet. Leaving families all over this state without any services. Without any help. Most of us CANNOT afford private therapy out of pocket. Our insurance company will pay for 40 sessions per year. Period. We have speech therapy 8x month. So half our year would be out of pocket without Babynet.  What’s worse is most people in this state just shrug when pressed as to why MUSC and other major providers of services are dropping Babynet… “it’s just SC.. what do you expect?”  I, as a mother of a child who requires services, EXPECT the system not to fail my kid. I expect New York level of service. I expect Babynet to work. It’s a federally mandated program after all.  SO… make it work dammit.  Instead, I feel like one very small person in this battle. It’s not up to me. It’s not up to the thousands of parents this is going to fail. But there it is… the largest children’s hospital in this state will not work with the early intervention program. The best speech therapist and one of the only AV certified therapists in the state will not work with them. So, we like so many others will have to walk away. We cannot afford our life and that much private therapy. AND…the amazing service providers (therapists) that do work with Babynet ARE NOT BEING PAID. Ours… not paid since last summer.  This is the definition of broken. And it sucks. We’ll add more services at home and will be fine… I think. But that wonderful woman needs to be paid. Babynet needs to be fixed. 

On top of this revelation, our fabulous home therapist mentioned Landon needs an Occupational Therapy (OT) evaluation. She seems 10 for 10 for  sensory-related issues. These early signs include crashing into things on purpose, falling off of things on purpose, enjoying being under things or in tents, aversion to textures in foods, grasping one thing in each hand consistently, banging a lot, experiencing things with her feet first- books sometimes, walking on her toes, falling and crashing as just mentioned but with no crying, an obsession with water, flipping constantly through books, and showing signs of early ADD. A lot of this can be brushed off as her being a toddler. But once I read about sensory sensitivity and OT, it clicked. Landon’s sense of hearing is impaired, some of her vision is impaired wouldn’t it make sense for her other senses to be heightened? Of course it does.  Oh and the OT therapy in Georgetown County (Nextstep). DOESN’T TAKE Babynet either. Of course they don’t. 

But after the research, after learning that we needed most likely to add another type of therapy to our lives. Add another type of therapy to master at home… I lost it.  How? What? More? When?  I sobbed to Bo. Then to his dad. Then on my own.  Between Babynet and OT.. it’s too much. To have moved here and feel like things are getting significantly harder. What was I thinking? 

I thought I’d be strong enough after this year and a half to handle new therapy. New information. Adding more to the proverbial plate. But instead… I crumbled. We have to apply for secondary insurance. Tefra. It’s complicated and feels awkward and the least easy thing. New York made it easy. Sign here and boom.. no more conversations about payment or services. It was seamless. Easy and a wonderful thing for a raw parent to experience. But not here. 

I’ve written a list. To literally do things one step at a time. Do the OT evaluation. Fill out Tefra paperwork. Drive it to Georgetown. Make list of how many sessions we’ve had this year. Stop seeing MUSC at 40 sessions.  Wait until we know if approved for Tefra. If we are, resume MUSC. If not, up sessions at home. Reapply for Tefra.  Find an OT that takes Babynet in the meantime. Do they exist? 

Then breathe. This is a marathon. Not a sprint. I’m strong enough. Repeat that phrase. It’s for Landon and that is all that matters.

Pray for us though. Pray for my strength. These days I just don’t feel like I can fight this system alone. After that list come the letters to our elected officials.  Maybe a visit to their offices when I’m home in VA. A part of me feels like I’m just getting started…

This face makes me remember it’s all worth it. 






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