Sunday, January 10, 2016

Busting Recovery Myths

The following article is part one of two parts written by Clay Nichols, Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software. It was originally published in their free newsletter in August 2015. Clay has given me permission to re-post his article on our blog. 

Clay has spent the last 20 years helping patients, caregivers and speech pathologists with speech & language software. He's picked up a lot of tips and tricks along the way and he shares them in his free newsletter.

I encourage you to visit his site by clicking on this link: Speech & Language Therapy Software for stroke and brain-injury survivors 


What you need for speech & language recovery. And why you might not get it.
Stroke and TBI survivors talking to Clay:

"They told me the window for my recovery had closed." - Stroke Survivor

She said I had plateaued, and that I was as good as I was ever going to be," recalls Ms. Hervey, in a Wall Street Journal article (11/28/2006)
I’ve had lots of stroke and brain-injury survivors recount similar stories. And then their therapy ended. 

But, it’s a myth.
The origin of this myth is complicated. I don't think any speech therapist is saying "No patient can improve beyond X months". But that's what patients hear. Some survivors truly can't make progress, either because their deficit it too severe, or they are not motivated to do the work to improve. But that's on a case by case basis, not because there is some arbitrary "recovery window". 
Here’s what Dr. Jim Lynskey, PT, Ph.D has to say in Stroke Smart magazine:

"In truth, study after study shows that the so-called 'window of recovery' does not exist. Although the time shortly after a stroke occurs is important, most stroke survivors see the effects of recovery for the rest of their lives. Continuing physical, speech, and occupational therapy for years after a stroke can still yield positive results." (emphasis added)

The National Institutes of Neurological Disorders and Stroke (part of the NIH) agrees:

“For some stroke survivors, rehabilitation will be an ongoing process to maintain and refine skills and could involve working with specialists for months or years after the stroke."

Brain-rewiring, called Brain Plasticity, continues into Adulthood.

Scientists have discovered that the ability of the Brain to “rewire” itself doesn’t end in childhood, as was once believed.

“Today we recognize that the brain continues to reorganize itself by forming new neural connections throughout life. This phenomenon, called neuroplasticity, allows the neurons in the brain to compensate for injury and adjust their activity in response to new situations or changes in their environment.” writes Stephanie Liou at Stanford University.

Insurance Catch-22

Many get less therapy than insurance will provide. What you can do to get more.

We know the brain can continue to recover, even years later. So why do I hear from caregivers that they are being told the patient plateaued and (most importantly) insurance has not pre-authorized a follow-up visit to assess that expected readiness for more therapy? 

If the expectation from the insurance company is: You need to go home and practice until you’re ready for more therapy. Shouldn’t the insurance company pre-authorize the follow-up to confirm their assumption?

Yet, no caregiver I’ve ever spoken to has had that follow-up prescheduled. I don't think this is anything nefarious. It's just a flaw in the system. This may explain why therapy more often ends due to lack or progress rather than exhausting benefits. The data from speech therapists confirms that therapy ends 400% more often due to lack of progress than lack of benefits. Insurance is prepared to provide more benefits if you can make more progress.

The root cause of this seems to be the policy of many insurance companies that they will pay for additional therapy only when the current therapy produces results. That seems like quite a reasonable policy aimed at putting resources where they will do the most good. That’s certainly not the effect it has.

Patients need 2 to 8.8 hours of therapy per week

A review of research studies indicates that treatment of 8.8 hours 
of week is effective. Conversely, 2 hours per week is not effective.

Click this link to see: Code, C, Petheram, B 2011.
Most caregivers and patients I speak with tell me insurance is providing 3 or fewer sessions and most sessions are 45 minutes. Do the math. That's maybe 2.25 hours a week.

In a peer-reviewed medical journal article: Code & Petheram report:

“Average hours of treatment for aphasic people in the developed world ranges between 1–5 hours per week, with a great deal of variability, although recent research suggests that intense
treatment of 9 hours per week over a relatively short period is needed in order to be effective. It is concluded that there is a significant gap between what the research suggests is the appropriate amount of treatment and actual provision throughout the English-speaking world. (Code and Petheram, 2011)." (emphasis added)

The same article reported a study that showed two hours was not enough weekly treatment to be effective. These are statistical averages and every patient is different. Some may need less or more than the average. Ask your therapist how many hours of practice you need.

Speech Therapy May Not Be Appropriate

Just as there is not rule that says recovery stops after X months or years, there is no guarantee that a patient will make progress. Some patients don't have a good "starting point" for therapy. Perhaps
they have no language whatsoever and have not made progress after 20 or 30 hours of speech therapy. Or patients may prefer to spend their time on something other than speech therapy. I tell
caregivers that stroke recovery like the old TV Detective Shoes: You have to show Motive and Opportunity. If the patient is motivated then the caregiver can provdide the opportunity. Some
patients seem unmotivated but are actually just blocked by some obstacle (fear of failure, difficulty in getting to therapy, etc.). We can remove obstacles, but we cannot provide motivation.
I'll be discussion that in an upcoming article of these Rehab Resources.

Your speech therapist's hands are tied

Your therapist has no control over the insurance company's policies. They became therapists to help you, but their hands are tied. The insurance company decides what they will pay for. If they'll pay for only 10 sessions, your treatment ends in 10 sessions. You could pay out-of-pocket but therapists understand that most people can't afford that. If you pulled out your checkbook it would cost $100 to $400 per extra hour of therapy. FYI, I'll be covering some suggestions for much more affordable therapy in a future Rehab Resource. Also, if they suggest that you need more therapy than insurance will provide then patients are likely to expect the therapist to appeal to the insurance company, a faceless bureaucracy. And your therapist would have to do that on their own time. The insurance company certainly won't pay the therapist to advocate for more money from the insurance company.

Avoid the Plateau & get more therapy

If the patient gets the additional 6 or 7 hours of weekly practice the research shows is needed, then they could make enough progress to avoid the problematic plateau and avoid therapy ending prematurely. It's a double-win: you make more progress and get more therapy, increasing the odds of even more progress.

So, now we know:

Recovery is possible even years later (From Resource #1) If...
1. The patient can get enough therapy, but...

2. The Insurance Catch-22 means that patients often do not get enough therapy....

3. You just need to find a way to get more treatment.

So, if insurance won’t pay for additional therapy unless you make progress, but doesn’t provide enough therapy to make that progress, how can you get the extra 6 or 7 hours of weekly treatment to make the progress insurance is looking for? I'll cover that in the next issue.

My Solution... in an upcoming issue

I’ll tell you how I overcame the Insurance Catch-22.

I'll also tell you how you can use that same approach to improve your odds of getting all the insurance-provided therapy you deserve and likely increase the speed of your recovery, and your odds of getting all the insurance-provided therapy you deserve (and need!).
Blog editer note: I will post the "Solution" next week but, if you don't want to wait, go to Rehab Resources site and look for "How I got 100 extra hours of rehab" :
Clay Nichols

Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software

For over 20 years, Clay has helped patients, caregivers and speech pathologists with speech & language software. He shares the tips & tricks he's picked up along the way.

He is not a speech pathologist.

But he consults with the speech pathologists he works with. You should consult your speech therapist regarding any tips you read anywhere, including the Rehab Resources.

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