Treatment for Catastrophic Brain Injury: No Gate Keeper

Treatment for Catastrophic Brain Injury: Rita Part Twelve

In part twelve I talked with Rita’s mother and the treatment for catastrophic brain injury she has received.  Again limited because of Medicaid being her insurance.

Has she had a neuropsychological evaluation as part of her treatment for catastrophic brain injury?

No, no.

Has she not recovered enough to make that meaningful?

I don’t know that much about them so I can’t say.

Nobody’s suggested it for her treatment for catastrophic brain injury or nobody’s going to pay for it?

We’re by ourselves.  We have nobody.  We don’t have a doctor.  We have nobody, you know, it’s just me basically.

Does she have a primary care physician?

She does but it was somebody that we met after the accident and she got an ear infection in November so we had to find somebody to go to and we saw her in November and I have not talked to her since then.

So she doesn’t have a gatekeeper?

No.

Did she get the physical therapy referral from Bayfront for her treatment for catastrophic brain injury ?

Yeah from the physiatrist.

Have you asked the physiatrist to give her a primary care referral in this area to follow up some of these needs?

They don’t know anybody from this area.  I had to find them myself.  In fact, when she got really sick that time we didn’t have anybody to call but them.  And they were like well we’re not the doctors you should be calling.

Are you part of a good brain injury support group?

Yes.

How did you get to the group?

When I was working in the real estate business I belonged to a lot of networking groups and I had met Michelle (the support group facilitator). I didn’t pay any attention to what she was talking about but I remembered it.  When we were at Bayfront they have a support group there also and they did tell me about this but I actually knew Michelle before so.

(Michelle and her son TJ will be the subject of our next story.)

When did you start going to the support group for part of her treatment for catastrophic brain injury?

Right away, our daughter’s accident happened in December.  This group started in January of 2010.

My daughter and her friend look so much alike it, it’s shocking her friend also had the same type of accident on the right-hand side taken out, she had the split in her stomach.  Her recovery –

Same hospital?

Yeah, same hospital.  Same everything. She got to stay at Bayfront at the rehab floor though for about six-seven months.

She had private insurance?

She was younger.

So she was still a minor?

Yeah, yeah, well she had just turned 21 so they were able to use their parents’ insurance.  See it’s great if you’re under 21 or over 65 in our country but that –   big huge gap good luck, yeah, there, there’s just not a lot.

I met Rita’s friend at the support group.  She is one of those miracles.  A happy, outgoing, delightful young woman.  If her injury was the “same everything” as Rita’s, she is the “evidence base” for the difference between getting aggressive treatment for catastrophic brain injury at six weeks versus at seven months.

No two brain injuries, especially severe brain injuries are the same.  Yet the place that the “same everythings” departed the most dramatically was delivery of care and rehab. The care Rita’s friend rightly received is as stark a the contrast as the difference between what Rita and Gabby Giffords got.  Sadly, there are far more Rita’s than anyone is willing to admit.

Next in Part Thirteen –  Getting the Most Care the System Will Allow

By Attorney Gordon Johnson

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