The good news, kids, is that the state has determined that Namine still qualifies to receive disability benefits. The bad news is that she still has not received her speech prior authorizations, and likely never will. This means that she can’t receive speech therapy.

Checks and balances

I meant to write about this some time ago — more as a rant than anything constructive — but you know we’re always running around. My mother-in-law got admitted to the hospital, and Easter happened, and well, you know how life is. Anyway, we had received a letter from the state a while back indicating that Namine’s status as “physically disabled” was up for review. Well, we just received a letter saying that Namine continues to be eligible. Well, that’s good to know.

All sarcasm aside, I do understand the need for checks and balances. When Jessica’s dad injured his back, of course there needed to be a periodic check to see whether or not he still qualified for disability services, and whether or not those services would be discontinued once he resumed working. But I would think that somewhere in the system there is something that indicates whether or not an individual is born with a disability, something that will be with them for the rest of their life.

The first letter — the one saying her disability status was under review — came as a bit of a shock. But at least now we know that this is something periodically reviewed, and we won’t be caught off-guard again.

Discontinued therapy

Speaking of being caught off-guard, it came as an unpleasant surprise to find that Namine’s physical and speech therapies were canceled until further notice. To be more precise, their prior authorizations for renewal — the doctor’s approvals — were not received.

Physical therapy wasn’t a total crisis. It’s simply that Namine’s therapist failed to coordinate the expiration of her current therapy duration with its renewal. As of this writing, we are now more than a month out from when PT expired, and we’ve only just received word that she’s been approved again. This is way too long to wait. Even so, Namine has only been approved for PT once a week, where she used to receive it two or three times a week.

The state of speech therapy (or lack thereof) is a little more alarming. We found out from the state that Namine’s speech is not only discontinued indefinitely, but that we must appeal the decision in court if we want it reversed.

Lack of progress

The state’s decision to deny prior auth for any more speech therapy, it seems, is due to the therapist attesting in her submission that Namine has shown little to no improvement over the past six months. Lack of progress indicates that state dollars are being wasted; there is no sense pouring more money into therapy for a child who is never going to improve their speech.

This would be no problem if it were so. But Namine has improved. Six months ago, it was November. Namine was still getting used to the palatal prosthetic then, but as she got used to wearing it, she tolerated it longer every new day. She also got to the point where putting in the prosthetic didn’t make her throw up anymore, which was a seriously big deal. Then in February, we had a big change. Namine’s speech therapist — the same one who in her report said that Namine has shown no improvement — told us that her speech was so good, she no longer had to wear the prosthetic. (Confused? We are too.)

Then a couple months ago, Namine had an appointment with the speech pathologist. Namine had backslid a bit when it came to wearing the prosthetic, and was once again gaggy when putting it in. The pathologist proceeded with the tests without the prosthetic, and found that Namine had better air control and less air leakage then ever before — even better than when she’d had the prosthetic in. Wearing the prosthetic had taught her the control she needed, and he, like the speech therapist, concluded that she no longer needed to wear it. It had done its job, and was no longer necessary.

In looking back over the past months, you can understand how perplexed we are that Namine’s therapist would say that she’s seen no improvement. Namine’s speech is not so good yet that she would no longer need therapy, but neither has her speech stagnated.

  • Are you going to argue the decision? The therapist may have said no progress on actual talking, but there was progress in other areas which will now help her progress with her talking. Good luck!