Wednesday, March 21, 2012

Choosing The Best Therapy For Your Preemie (Part 1)

What a dizzying world therapy is. We got our first taste of this when we started to read online preemie forums back when Jack was in the NICU. We were totally overwhelmed. Not only is there a steep learning curve with a whole new vocabulary to learn, but you soon realize that getting your child into the right kinds of therapy might not be as easy as it seems.

We started to hear phrases like "early intervention" and we struggled to know where to begin. Do we just do a Google search and call up a random number? Do we have to enroll ourselves in a program? How long will it take for our child to be seen by a therapist? And what if our insurance won't pay for it? These questions came to mind immediately and there were no easy answers.

Each state is different and there is no written, step by step process for getting your child into therapy. Each hospital is different, too, with varying amounts of support from social workers and medical personnel. Our NICU therapist actually made the initial contact to set up therapy with our local hospital upon Jack's discharge. If you are in the NICU right now and want your baby to be in therapy once you get home, my suggestion would be to talk to your NICU social worker about the steps you need to take to get the ball rolling.

Once we were home, we had our initial first meetings at the local hospital. The therapists evaluated Jack and told us that he was, indeed, a candidate for therapy. We found out that there are three traditional areas of "treatment" or therapy:

-Occupational Therapy (focusing on fine motor skills)

-Physical Therapy (focusing on gross motor skills)

-Speech Therapy (focusing on communication).

Under each of the three therapy areas are a bazillion subsets of therapy. Yes, I said a bazillion.

I came away from those initial meetings knowing that #1, Jack probably needed all of those therapies (and some) and that #2, we needed to get Jack into in-home therapy. We started to jump through the hoops in order to get it set up in our house. There was absolutely no way I was taking my child into the hospital during RSV season. In order to approve this request, it took a lot of coordination between our pediatrician, the local home health company, and our insurance. There was no question that Jack, a 23 weeker with chronic lung disease needed this, but getting it approved was a whole other ball game.

Our health insurance gave us a case worker and we became friends real fast. There is nothing more frustrating than trying to approve therapy visits, but not getting an answer on the other line. With our case worker, we had a person we could direct all our questions and concerns to. And she, in turn, advocated for us.

Jack started therapy. Of course only a couple times a month at first because he was still technically a newborn. Babies are just supposed to eat and sleep, right? But we were so relieved that we were finally home and in Early Intervention. A sigh of relief that Jack was being taken care of. But our therapy journey was just beginning....

Stayed tuned for Part 2 tomorrow.
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Julie said...

I think our state is probably way behind in terms of early intervention, especially in-home early intervention. In many states, you would automatically have in-home therapy because many therapy groups simply think it's best to work with the kids in their own environments, regardless of isolation needs.

As you well know, our area is pretty thin when it comes to choices for therapy! Just think if you lived in rural MT. :)

Aidan and Evanna said...

Hi Jessi, that's good info, and great sharing, you don't know how helpful it is to me, I am awaiting for more to come! Thanks a lot for sharing all these!

Anonymous said...

Hi. I just found your blog - and am so grateful. Our son, Shaw, was a 27 weeker with a 122 day NICU stay.

Ironically, my daily struggle is therapy and I stumbled on your blog as you were discussing it. I'm wrestling with insurance, not qualifying for Medicaid and the need to pay out of pocket for many expenses to give our son the best care.

I'm considering starting a fund/nonprofit to support other families, like ours that need therapy, but can't get the support they need from their insurance. I would love your thoughts/feedback if you have some time.

Your son is beautiful.

candace richter