Help! I need somebody!

Sounds simple enough: everyone has come to the conclusion Little Miss would be better off with a mild dose of ADD meds. So let’s get some.

Not so easy, as it turns out.

Parents in Pennsylvania can apply for a state medical card for their children with autism, no matter what their income, thanks to a special “loophole” provision that simply acknowledges that some conditions just require a lot of money thrown at them. This card is a lifesaver–it covers wraparound services, which are normally not covered by private insurance. (Although the state did pass a provision for autism to be covered by insurance here.)

Neither the Cabana Boy or I have insurance at the moment through employment, so we depend on this card to cover both children who are diagnosed with autism issues.Not all doctors take the state’s card, of course, because the state pays less than traditional insurance companies. We’ve just paid out of pocket for those doctors, like the pediatric neurologist who has seen them for the past five years, because there are no other autism specialists for 100 miles.

This doctor has seen Ditto Boy for several years to prescribe his ADD meds (since the pediatricians won’t do that any more either). Seemed simple enough to set up an appointment for Little Miss and get her checked out for meds as well.

Didn’t it?

The doctor’s office called to reschedule twice and then the day before the appointment, called to cancel. She gets the state medical card, they said. We can’t see her. “But you saw her for three years; we paid you money,” I remind them. We’re not allowed to do that. We could lose our license, she says and she hangs up. Before I can say, “well then I want my $1700 back!”

A little angry by then, as we want to get started on this right away (and now we wasted two weeks waiting for them), I set in to start calling around for alternatives. The managed-care office gives me half a dozen phone numbers, most of which go to satellite offices of doctors in Pittsburgh who are in my county one day a month and think maybe I could see them some time by February. Or March. (Say what?)

I finally find someone who will see her within this month, but it’s only the intake worker.  The doctor can’t be seen till some time in December. Maybe. Or January. It was the best deal I got out of two hours of telephoning. I took it. At least December is before the year’s half done.

It’s a sad situation. Many children need services and there are very few child psychiatrists who can provide them. A complicating factor that I’ve found in working with families, of course, is that there are some parents who just can’t discipline their children or teachers who can’t control their classrooms, and they all rush to get the children medicated. And, of course, there are parents with mental health issues or other limitations or others who just can’t figure out how the system works, who probably can’t make as many connections as I have in order to get the services in the first place.  Bottom line is, kids on state cards get the back of the line, most of the time.

I’m grateful to have the card, don’t get me wrong. We’ve been fortunate to have many hours of services at no cost, and they have done our little ones a world of good–probably saved the state the necessity for caring for them lifelong. But when it’s so hard to get services, is it any surprise when parents who have reached the end of their rope take advantage of an opportunity to get help like they have in Nebraska?

In that Time article, the Rev. Steven Boes of Boystown says one root of the abandonment problem is that there is simply not enough help for parents in crisis. In Nebraska, for instance, there are only six child psychiatrists in the entire state, he says. “It’s a national problem … insurance often won’t pay after six visits — so if the kid’s not ‘fixed,’ you’re out of luck. States have a jumble of services. It’s a puzzle with missing pieces.” ‘

As a provider of services myself, I know you can’t treat everyone like an emergency. And, in all truth, this isn’t an emergency–I’m just anxious to have my children be the best they can be. But when some of my parents complain, “There oughta be a law…” I guess I can’t argue with them.


8 thoughts on “Help! I need somebody!

  1. Oh I wish I could help but we (like so many parents with an Autism family) are in a similar boat – just a different state set up (are there any good states to live in? I have lost faith). When oh when will this get better? Who will help us, the parents who are already exhausted beyond… well, beyond anything a typical parent should expect? Sigh. Hang in there.

  2. outrageous, outrageous!!! grrrrr. people need SERVICES! I know way too many parents of kids w autism, even who DO have insurance, going broke paying for this stuff.
    hope your dd gets what she needs soon.

    btw, I did read that some of those teen abandonments were because they needed help (medical, etc) that the parents could NOT provide. one mom said, “I love my son, but this is the best thing for him”. heartbreaking.

  3. We struggle with that too. We are fortunate to use the state program to supplement the PPO from my husband’s work, but some of the providers we see are covered by neither plan. I’m thankful to have respite/hab covered, but we can’t find therapists (OT, PT, ST, Music) at all – we’ve been on wait-lists for well over a year now. It’s frustrating. I’m tempted to just go private pay because TIME IS WASTING AWAY! Grr…..

  4. That’s the sad thing of course–I would pay for what isn’t covered. They won’t take the money. Any more. Even though they did already. *confused*

    Respite? You all get respite? Wow. *sigh*

  5. I know – that amazes me that this doc won’t do private pay anymore for you guys – I don’t understand that at all.

    Yes, we get respite in AZ! It’s wonderful – can be hard to find someone, but once you hook up with someone, it’s great. We have the most lovely woman ever. I am worried – if our governor goes to DC to be in Obama’s cabinet, the next in line is likely to change everything…so we shall see what happens in the next year.

  6. asdmommy – ouch! Talk about unintended consequences re: your governor. I do hope your services remain the same.

    We in Washington state also can get a “pot” of Developmental Disability money we can use for respite, parks and rec classes and a number of things. It seems that once you get “in” you are in and not subject to budget cuts, but if you are on the waiting list–well, not so pretty with this economy. Luckily, we are in the system.

  7. Hi:

    I found you from my blog and I have to agree with your post that there are simply not enough neurologists, child psychologists, child psychiatrists, who are taking on new patients or who accept your health insurance. It is very frustrating when your child needs these services and can’t get the help. It’s a maze and a waiting game and very, very expensive when you have to pay out of pocket.

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