Getting the run around while looking for an evaluation

OhSewCrafty

After talking with Charlie's pediatrician, she agrees that "something" is going on. Whether he's gifted or on the spectrum, she's not sure, but she wants him evaluated. Good, so do I. They referred me to a place in the area, only to find out that all the providers that took my insurance are no longer contracted there. I start calling around and it's the same story - no one seems to have up to date records of where these individual professionals are currently working. I did find one place that had an in network licensed therapist, but if he needed to see the psychologist or psychiatrist after the intake, that person wasn't in network and we'd be back at square one. 

Ahhhhhhhhhhhhh

I called my insurance company directly and they said that it sounded like I needed to find an agency, which there is only one in network, an hour and half away, who I've left two messages with and haven't heard back. I may need to give up on this and go through the IU. I have an HMO, live in a rural area, and don't have a lot of money (DH is currently unemployed after being laid off). I don't know what else to do. 

Is this normal? Am I asking the wrong questions or looking in the wrong places? 

bkeane619

How old is he? Did you try your school district?

OhSewCrafty

bkeane619 said:

How old is he? Did you try your school district?

He will be 4 on Halloween. No, I haven't - I didn't realize I could. 

OhSewCrafty

-auntie- said:

OhSewCrafty said:

After talking with Charlie's pediatrician, she agrees that "something" is going on. Whether he's gifted or on the spectrum, she's not sure, but she wants him evaluated. 

It might not be either/or. It could be both gifted and on spectrum. Or he could have the advanced verbal skills and intense special interests associated with some ASD presentations and be on spectrum and reasonably bright. Or it could be something else entirely.

I know it's more complicated than she made it seem - I think she just honestly had no idea what to tell me. A friend of mine who is a special education kindergarten teacher mentioned it seemed like Aspergers or OCD/anxiety to her, but made it clear that she was no expert. 

Good, so do I. They referred me to a place in the area, only to find out that all the providers that took my insurance are no longer contracted there. I start calling around and it's the same story - no one seems to have up to date records of where these individual professionals are currently working. I did find one place that had an in network licensed therapist, but if he needed to see the psychologist or psychiatrist after the intake, that person wasn't in network and we'd be back at square one. 

If you will need to use insurance, you best bet is a major pediatric teaching hospital in terms of getting coverage. Sometimes these are the best options available, but sometimes there are better clinicians who don't take insurance. Given his age, a developmental pedi would be the best choice- especially if you can find one that works with a team that includes a psychologist and other professionals.

The problem is that my insurance company is actually not too bad and makes great accommodations for out of network needs with specialists. My mental health insurance, however, is outsourced to a company called Optum, who has so far been incredibly unhelpful. Should this be through my regular medical insurance?

Ahhhhhhhhhhhhh

AHHHHHHHHHH

Exactly.

I called my insurance company directly and they said that it sounded like I needed to find an agency, which there is only one in network, an hour and half away, who I've left two messages with and haven't heard back. 

This speaks to a shoddy front office. You have enough on your plate, I'd move on. 

The bottom line is, unless you live in a relatively urban and affluent area with excellent medical access, you are going to have to drive. I am fortunate that I could actually walk to DS's psychologist's office in under an hour as well as that of another specialist in Aspergers who is literally 2 doors down- but for his dev pedi the drive is about 1 1/2 hours. Most people have to travel.

I know we'll need to drive and I don't mind - we end up all over the place for their specialists (Hershey, York, CHOP). I just don't want to travel all the way to York or even Allentown for a "yeah...they may be able to help you...." 

I may need to give up on this and go through the IU.

If you are going to be seeking supports or services once her starts school or are looking for a preschool, you're going to have to go through your local school district/IU anyway. May as well start that now.

This is true, I never thought of it that way. He spent a year in services through EI, so I'm familiar with the process. I'll call them on Monday and see what they have to say. 

I have an HMO, live in a rural area, and don't have a lot of money (DH is currently unemployed after being laid off). I don't know what else to do. 

With less than wonderful insurance, you will probably have to go through a hospital developmental clinic/department. In PA, that means travel to PHL or PGH. Skip Hershey. I know DS's eval at CHOP was a single all-day appointment with us getting a dx that day and a comprehensive report by mail a few weeks later. If you are reasonably near a train- Amtrak goes to 30th Street and local trains drop you a few blocks from CHOP's Regional Autism Center. In the center part of the state KKI in Baltimore is also a reasonable option.

After we figure out what is going on, I may switch him over to CHIP if he ends up with a diagnosis. That is wonderful insurance coverage and having a diagnosis makes him eligible for the better care than my insurance can provide. 

Is this normal? Am I asking the wrong questions or looking in the wrong places? 

Didn't we talk about this before, or am I confusing you with someone else? It can be hard to find a place that takes insurance. Not a one of DS's team takes our insurance and I have a "decent" PPO. His dev pedi and psychologist don't take any insurance. None. I really think a Developmental/ASD clinic at a hospital is going to be your best bet. It's going to be a one shot appointment in most cases with follow ups yearly or so; distance isn't as critical as it would be for a chronic medical condition that required regular follow ups.

I posted about 2 weeks ago with my initial concerns and you were very helpful in helping me understand what we could potentially be dealing with. Thank you again for that. 

That's helpful to know as well - I didn't know if this would be an ongoing, need to see him in several settings type of deal or if it was typically a one shot thing. 

Thanks again. 

CaptainSerious

To piggyback on what auntie said, you may also have to wait a while if you want a full evaluation.  I had to book about 6 months out for each of my children's nueropsychological evaluations at CHOP.  Children's Specialized, which is closer to me here in NJ, was an 8 month wait.

If you are already driving to CHOP for some specialists, I highly recommend trying the doctors there first.  Even though it's an hour and a half drive for us, I love that almost all my sons' specialists are in the same network, so they have access to all information and reports from one another through their network.  Frequently, when I'm in an appointment with one doctor, they pull up the results from another specialist's appointment to cross-reference.  It helps the doctors have a much better picture of my childrens' overall health.

Both my boys see a developmental pediatrician in CHOP's Atlantic County office in NJ, but he's not the one who did their evaluations.  For that, we went to the Child and Adolescent Psychiatry and Behavioral Science department at the main hospital in Philadelphia.  Like I said, we waited about 6 months for the appointments (from first call through appointment), but during that time, they reviewed our request for evaluations (and letters of necessity from our referring doctor) and arranged for payment from our insurance.  It was covered by our medical insurance (not mental health).  The first one was fully covered, with the exception of our copay; my second sons' was only partially covered, and we paid the rest out of pocket.  The evaluations were each over two days (one really long day and a half day the second visit), and then we had a follow-up visit about a week later to discuss the results with the doctors.  This was extensive testing at a school-age level, though, and may be more than your son would need, as he's younger.

Best of luck.

OhSewCrafty

I called my insurance company today and they need a letter from our pediatrician about what is going on before they can determine whether they'll let us go to CHOP or not since there are "plenty of options around here." Uh huh. 

In the meantime, I submitted the IU referral form this morning, so hopefully I hear back from them soon. The CA IU is a bit slow, but I've heard good things about the actual evaluation stage once you get there. 

Thank you for all of this support and ideas for avenues to pursue. I can't tell you how much I appreciate it. 

OhSewCrafty

NandaB said:

They have the advice handled, but I just wanted to say Hi! I don't know if you recognize me, but I was on the April 13 BMB (until the bump got wacky and it was too hard to navigate back and forth on mobile.) Sorry you are dealing with this stress, but these ladies are super smart and will steer you in the right direction! Hope all is well with your not-so-little one. I'm sure they're keeping you busy- I feel like I'm herding cats all day sometimes, lol.

Hey Nanda! Yes, I remember you. And thank you, I'm definitely happy I found this board!

CaptainSerious

OhSewCrafty said:

I called my insurance company today and they need a letter from our pediatrician about what is going on before they can determine whether they'll let us go to CHOP or not since there are "plenty of options around here." Uh huh. 

In the meantime, I submitted the IU referral form this morning, so hopefully I hear back from them soon. The CA IU is a bit slow, but I've heard good things about the actual evaluation stage once you get there. 

Thank you for all of this support and ideas for avenues to pursue. I can't tell you how much I appreciate it. 

This is typical for this type of testing.  It's called a "letter of necessity," and your doctor should be comfortable writing one.  These evaluations are time-consuming and costly, so the insurance companies just want to make sure that every "hysterical mother" doesn't just start having them done without there being a significant medical concern (or every "tiger mother" to use as evidence of how advanced her kid is).

Don't be dismayed by this, it's part of that 6-8 month scheduling process I mentioned.

ETA:  If you call CHOP to schedule an appointment, they'll ask you for the letter of medical necessity and get the insurance approval for you, so you don't have to go through all the legwork yourself.  The Child and Adolescent Psychiatry and Behavioral Science department wouldn't schedule our appointments without first finding out from the insurance what they would cover.  In my older son's case, the insurance denied us, and CHOP appealed the decision on our behalf, and got the testing mostly covered.