We thought medical insurance covered it too!

We went to an OCD Outpatient Treatment Program in Florida.

We have been out of state again for 5 long weeks now. We came to a program that was hopefully one more step in the recovery process from encephalitis. We chose to come here because in the spirit of the JCAP (Journal of Child and Adolescent Psychopharmacology) treatment guidelines, and knowing CBT therapy has already been positive, we believe this type of ongoing therapy has a place in our treatment program. Now we are this far along in our journey, we chose a very well established program for OCD, anxiety and mood disorders to reinforce some new coping skills.

This particular program has been here for many years and according to several of my friends, their success rates are pretty good. When we got here the behavior specialist took a few days to figure out where she would be going with the treatment. What were the triggers, was it OCD? Anxiety? etc. certainly nothing we haven’t heard before. This program is designed to be 6 weeks long – and there is a reason for that. The thinking is: 21 days to break old habits, 21 days to rebuild and practice the new habits and coping skills. Again, established program, good success rates, attached to a major medical establishment, well-defined protocols, credentialed behavior specialists and overseen by medical doctors and psychiatrists.  You think it would be a no-brainer. A child in recovery from encephalitis, a previous hospitalization, a different outpatient treatment program, school challenges and neuropsych evaluations to back up everything we knew so far. It seems like getting insurance to cover this well-established outpatient program would be easy, right? Because who wouldn’t want to pull out all the stops for a kid who is often suicidal, a kid who displays both behavior challenges and grief from years of medical misdiagnoses and has internalized feelings of hopelessness due to a chronic misunderstanding of what was going on in his mind and body (encephalitis is difficult to diagnose as we well know). Now a teenager who has struggled an entire lifetime to get to this point, and is willingly trying to embrace the therapeutic programs being offered so they can cope with all that they have ahead (high school, college, employment, marriage, career, life) – yet we can all predict what’s coming next…

Navigating the Insurance Roller Coaster

Insurance in America – especially for mental health – is challenging, actually, it’s worse than challenging. At one of the most stressful times in our lives, not only are we moving heaven and earth to help our child, we are expected to constantly play the pull-push game of insurance coverage/no insurance coverage/insurance coverage/no insurance overage.

We entered this 6-week program with approval for only 11 days. To be clear, if we were to complete the 6-week program, we needed a total of 30 days but for whatever reason, our insurance approved just 11!  We moved forward with 11 days feeling confident it would be extended as necessary. At the end of what equated to 2 weeks and 1 day in treatment, we still hadn’t heard back from a request made on day 9 for additional coverage to be approved. Technically, as there was no response from our insurance company, we found ourselves without insurance coverage. In good faith, the first uncovered day we were allowed to sit back and wait to see, but when approval hadn’t come by the 2nd uncovered day, we were asked to sign a letter confirming we were now self-pay patients with the hope that our insurance company would backdate our next approval, when or if that approval came. Our signature confirmed we would be responsible for the daily rate of $525. Finally, approval for 7 more days arrived a day after we signed that self-pay letter. Then, as before, those 7 days ran out and once again, we were stuck waiting on an approval/or denial letter. However, just sitting and waiting for insurance to make a decision is not practical, so we roll the dice that approval will come, sign once again for self-pay and wait. We go through this process 3 more times. Approval for an additional 5 days and then done and wait, then 5 more days – done and wait, and then finally 3 more days (always a delay in between, always papers to sign, always worried there will be no more approvals). Then, the final notice arrives with the caveat that this would be our absolute final approval. To get that final 3 days, initially it was denied, we needed a peer review between the insurance company and the center. Thankfully our doctor was able to scramble late on a Friday night, make the necessary call and plead our case. Apparently, that call ended with “I can only authorize 3 more days.” Our plan had been to request an additional 5 days in the partial hospital (6 hours per day) and then 5 days in intensive outpatient (3 hours per day), but knowing that additional requests would be futile, we reluctantly had to accept their decision to cut the programming short. To add to the stress, due to an internal miscommunication, when we arrived on Monday we were told insurance actually had issued a denial and all we were approved for was once weekly outpatient therapy. Of course, this threw us right back into chaos, and our clinicians into scramble mode. Apparently, the paperwork had not been updated, the denial was incorrect and the 3 days stood as approved. It is really exhausting just trying to keep up.

Keeping Insurance Reimbursement Flowing

I like to think that this company has no idea how the constant lag in approvals, the lack of communication, the making us continually worried about treatment costs, worrying about insurance approval ending before we finish the program, adds to our stress level. I like to think that, but my cynicism is saying, they actually don’t really care. Why not just approve 25 days upfront. Knowing that the program is 6 weeks long, and almost everyone will need that length of stay, approve the time with a smaller window to reaccess at the end. What’s the motivation for fighting tooth and nail for tiny increments that creates stress on top of stress during an already stressful time? Why, when this program has established contracts, an effective track record, and evidence-based treatment plans in place, is the insurance company deciding treatment lengths? Is it really the insurance company that should get to decide when a person is ready to leave? It begins to feel like the decision is not about mental health and stability, but more about profit margins and strategies to save money.

Truthfully my insurance company has had no direct contact with me to find out what the program is doing for us, they don’t know what we think, what we have done, where we have been, why we are here. Yet neither do they trust the professionals working with my child to follow a treatment plan? The professionals at the program say we need more, but our insurance company gets to say no! They decide.

I explained all this to my “advocate”.  She chose to let me know that once a patient starts making progress they must move on! Turning the “least restrictive level of care” wording to their advantage. I had to ask if she might ponder why parents brought their children here, was it really for fun? Does the company truly think treatment is so much fun they malinger to stay? Does this company truly think that patients are so scarce, treatment centers hold onto them because they fear there are not enough to go round?? I was being sarcastic, but shockingly – she replied that “yes, sometimes that happens!” I tried hard to stay calm. I can’t think of one parent who sits in a place like this for fun. Who would make a decision to enroll their child in a program like this because they are slightly struggling? I can’t think of anyone who would continue a treatment program they were making no progress in, it makes no sense.

The bottom line, patients enter treatment programs because they need help. This center helps, the staff are well trained, they are all professionals, they are doing the work to give kids tools so they can manage their OCD, anxiety, and depression. This isn’t a magic pill, it isn’t quick, it takes time, it takes practice and it isn’t easy but learning the skills is a necessary part of what needs to happen for many of our kids to get better.

Who is REALLY a barrier to our treatment program:

The public persona of Beacon Health Options is admirable yet the patients who need the insurance support and their ex-employee reviews tell a different story (read all these reviews, and the ones linked above, carefully).

Ultimately, most of what we needed has been covered, but it was stressful and exhausting going backward and forward constantly asking for what we needed. It makes me sad but it also makes me really, really, really angry that a company’s profit or their disorganization (I can’t quite figure out which) dictates a child’s mental health treatment and potentially removes the support needed for them to actually get better. Someone at Beacon Health should know that there is a disconnect, they are not following through as the company they purport to be.

Anyway, it means we left our PHP (partial hospital program) earlier than hoped and stepped down to an IOP (intensive outpatient program), for which once again, currently there is no insurance approval. It’s a necessary step in treatment and when all’s said and done, we are only a few days short of our anticipated goal but why it had to be so stressful, I can only guess. In case anyone thinks this is just one more whiny, self-entitled idiot complaining about things that are my responsibility – please know we have already met our $12,000 deductible, and our 80/20 requirement, so the insurance company is at the 100% payment threshold and perhaps that’s where our answer lies best.

Is it really helpful to know that there is always someone else worse off?

As dissatisfied as I am with our insurance company’s shenanigans, I am just grateful beyond the core of my being that we don’t live in New Hampshire. “New Hampshire is the only place in the country where the ward for people at risk of hurting themselves or others, called a secure psychiatric unit, is located in a prison.” The Marshall Project Surely we can do better than this?

Mental Health Parity Act “The Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 requires health insurers and group health plans to provide the same level of benefits for mental and/or substance use treatment and services that they do for medical/surgical care.”

“Chronic stress, or a constant stress experienced over a prolonged period of time, can contribute to long-term problems for heart and blood vessels. The consistent and ongoing increase in heart rate, and the elevated levels of stress hormones and of blood pressure, can take a toll on the body.”

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#PANS #PANDAS #OCD #MENTALHEALTH #encephalitis #stress #depression #anxiety