I'm Going To Have To Sue Somebody (Long and Ranty)

I’m so frustrated with “the system”. I wouldn’t be surprised if this thread sank like a stone, but I just need to get this off my chest.

My youngest son, age 7, has something wrong with him. Other than the obvious Chiari Malformation Type II, macrocephalgia (without hydrocephalus), mild seizure disorder, gross motor delay, fine motor delay, and crossed eyes that he’ll need another surgery for. I’m confident he has ADD, as he completely fits the profile and fails very test for it that I’ve found online. Anybody that’s ever known him and/or worked with him has encouraged me to have him tested. For months I’ve been trying to get him tested. But it seems we’re stuck in this “system” bullshit that we can’t seem to get out of.

First I called his doctor. No, sorry, but because he gets SSI, he also gets AHCCCS, Arizona’s version of Medicaid, he has to go through the school system or behavorial health. I call the school. No, sorry, we don’t do that, call his doctor. I call behavorial health. Yes, we do that. Yay, we’re getting somewhere! We go in, have a 20-minute meeting with someone that calls herself a social worker. Not a doctor, no assessment was done. She tells me he doesn’t have ADD based on the fact that he didn’t interrupt us during this 20-minute meeting and wasn’t bouncing off the walls. I point out to her that no, I don’t think he has ADHD, but all the signs of ADD are still there. The forgetting things, the not focusing even as he’s being spoken to, the carelessness and impulsivity, the inability to follow instructions at home or at school, even though his IQ is clearly average or even above. There is clearly something wrong, but at this point, I just want an evaluation. A professional, to administer some kind of test, to speak with him, something concrete to let me know just what is the problem.

Social worker lady hooks us into this “Child and Family Team” program. Now a stranger will be coming into our home at least once a week, to work on my “parenting skills”. I’m a little put off by this, as I’ve raised two other children to teenage-hood and they don’t seem to have any major problems, in fact they are well-behaved young men that do well in school and in their community. But okay, I agree to do this for now. Maybe I’m missing something, maybe I’ll learn some new techniques, maybe some good will come of it.

Three months and 13 scheduled appointments with the Child and Family Team lady later, she has canceled all but one apppointment. I’ve met with her one time. She took some information, listened to my concerns. She advised me that I can now qualify for an evaluation for ADD because it seems to her like maybe he does have it, and I’ve already been doing everything that they want you to do first before going to the next step. I’ve been making lists for him to help with forgetfulness, I’ve been keeping our home life to a strict routine, I’ve been making instructions plain and simple for him, and on and on. I’ve scheduled my life around helping him deal. She says she’s going to visit him at school, keep coming over. She never did visit him at school, and since her one visit, she’s cancelled on us 6 times for subsequent visits. She cancelled our first visit 6 times before she made it.

She says it’s the Department of Developmental Disabilities’ responsibility to approve him being tested by a psychologist. Yet DDD keeps referring me back to behavorial health, who referred me to her. I don’t care whose responsibility it is, whatever it takes, I just want an evaluation. I’ve been trying to get one for months, and everyone keeps passing the buck. It’s not their job, go there. No, no it’s not *our * job, it’s theirs. And so on and so forth. I’m tired, I’m frustrated, I’m losing my patience. Lots of other parents seem to have no problem at least getting an evaluation, but I apparently can’t get one without taking someone hostage.

Lately I’ve been thinking of hiring a lawyer and suing someone. I don’t yet know who, maybe DDD since it does seem to fall under their umbrella. Maybe the school system, since they do seem to have some responsibility to assist this kind of student. Maybe the Child and Family Team lady, since she can’t seem to be able to at least come over as her job description states.

This all fills me with grrrr. And my child, meanwhile, is not getting what he needs, because nobody seems to think it’s their job. Tomorrow I am calling… who? I have no idea! But someone, dammit, I’m calling someone!

I wish I could offer more than my sympathy, but if it helps you’ve got a hell of a lot of it right now. hugs

See, I’m so frustrated right now that just that little bit of human caring brought tears to my eyes. Thanks.

Any time.

trublmakr, the system can suck eggs. You have my sympathy.

Best of luck to you and your little guy!

Does your son have an advocate? Can you hire/find some kind of legal advocate who can make these people do their jobs? I don’t know about suing, but maybe if they hear from an advocate who knows the law and won’t take any guff it’ll grease the wheels? Good luck, I hope you get this worked out soon. My thoughts are with you and your family.

Thanks to you, too, Denis.

After my eyes filled with tears, I really did break down and have a good cry over it all. I can’t say I feel much better, but at least I did tire myself out so I can go to sleep now. It’s not hyperbole when I say I’m going to sue someone.

I really am, and I’m going to try to get the ball rolling on it tomorrow, if I can figure out who to call. I’m also going to call the Child and Family Team lady and let her know that today’s cancellation was my last straw with her. <Deep breath> I hate courtrooms.

As far as advocates, I was always under the impression that that would be his DDD caseworker. We used to have an excellent one. She was fresh out of college, so idealistic and gung-ho. Then of course she quit, and the one I have now I’m lucky to hear from once or twice a year.

I will be making some calls tomorrow, and making some trouble if needed.

trublmakr, you’re a “mama bear” right now. You do what you have to for your guy. You have my, and I suspect many othe Dopers’, support.

I’m so sorry you’re coping with this right now. It’s difficult enough to have a child who struggles with an underlying illness; it’s even worse when you think he’s not getting the kind of care he needs and deserves.

call and talk to someone at “value options”. it is also through the state. you should get better response from them.

been there. good luck!

Perhaps it would be a feasible idea to use the money you’d spend on an attorney to pay to have your child tested by a qualified private psychiatrist? Then, with diagnosis in hand, you can get the treatment he needs through the system.

If you don’t mind, I’d like to share your OP with one of the professors I work for. She’s a specialist in special education and might be able to offer some guidance on how to proceed.

Robin

That would be cool, Ms. Robyn. From what I can figure, he’s stuck in some red-tape between ACHHHS, ALTCS (Arizona Long Term Care Systems), Title 19, and DDD.

Oops, that would be AHCCCS. Arizona Health Care Cost Containment System.
And the reason I don’t want to pay for a private evaluation myself is, there has to be other kids that go through this. Pitching a fit may not only help my own child, but others as well.

my daughter has ADD, and it was a long process to get her diagnosed. Your child’s primary care physician is certainly a key part of the process; we’ve never had to deal with social services organizations at all. There are behavioral questionnaires that you, your child’s teachers will need to fill out. There are medical exams including blood work to eliminate other causes. I found that the school psychologist in our child’s school was a great help in pointing us in the right direction.

Good luck, hang tough and stick with it.

The red tape bullshit is maddening. Is there a local newspaper or news station you can go to that shames these assholes into doing their jobs? Sometimes three short minutes on the nightly news will get them off their butts and into action.

Best of luck to you and the young 'un.

Yeah, sounds very simple, no?

If he had private insurance, or even just AHCCCs, it would be no problem to do these things. However, it’s because he has all these other agencies “working” with him that he hasn’t been able to get it. I’ve heard “it’s because he’s with DDD”, “it’s because he falls under Title 19”, “it’s because he has ALTCS”, etc. Nobody can tell me exactly whose responsibility it is, only that it isn’t theirs.

Simple? Not hardly, and our case was pretty straight forward. Does your son have a primary care physician? I would work with them first, and explain the outside agencies and the red tape you’ve had to deal with. They should be able to initiate the testing and are hopefully familiar with dealing with some of these other agencies.

Try filing a grievance…

http://www.ahcccs.state.az.us/Services/Grievances/