How Do We Get Services?

[Otto von Bismark]

I wrote last month about my son who was hospitalized. We are now trying, on our own, to get services. I keep reading about agencies, and "wrap-around" things, and such, but I can't quite seem to get connected.

So far we have:

• called pediatrician to get referral to neurologist for brain stuff. Hospital psychiatrist said he needed scans to look for organic problems (still waiting for peds to call back -- trying to get consult with peds doctor without child present takes longer)
• started neuropsychologist and educational psychiatric testing on our own, which will finish up this Saturday. We are paying almost 2 grand for this, even after our insurance kicks in its meager amount! Is this normal?!? We should have diagnosis/disgnoses after this Saturday. It will be a total of about 12 hours of testing.
• called several behavior health agencies and left a million messages
• fired one psychiatrist and are waiting for end of November for our new one. After bad reactions to two different types of medications, we are medication free. Hallucinations are gone, but he is angry.

I am trying to find someone in our area who has more of a bundled service.....I really think we need a social worker or someone who knows how to deal with this stuff and can help us coordinate. Any recommendations.

One Mental Health agency that works with teens says they can start working with us once we have some sort of diagnosis, if they take our insurance.

Is it normal for everything to take forever and be prohibitively expensive? I called Agency A and they told me to call Agency B. When I called Agency B, they told me Agency A would be the one who could help us.

I called ARC and they told me they don't touch mental illness, so I called NAMI in our area and they told me they have nothing for teens because their families are "too embarrassed" and no one shows up to support groups.

I called for medication-Waiver -- they told us ten year waiting list. I called Big Brothers/Big Sisters and someone's recommendation, and they have no budget and have everything on hold. Not even a waiting list. I called a very active, large, monied organization developed by our HUGE church that has therapy, residential living, and they even refused us.
No one wants to touch animal killing and public masturbation. (I can't imagine why!)

I feel like we can't connect to anyone, even though I spent -- not joking -- five hours on the phone on Monday.

Meanwhile, I got my oldest daughter an appointment with her own therapist this week, as she says she is about to crack with pressures from her brother and school. And, my son has gone from wanting to stab himself to being afraid to sleep because someone else is going to break into our home and stab him. He also dropped the F bomb on his teacher yesterday, and told several lies about the whole incident to his school counselor and to me. All this between being excited for trick-or-treating and going to a peer's bat mitzvah (unsupervised) this weekend. I am not comfortable with him being on his own for these activities.
I don't know how to parent this kind of stuff, as it is new to me.

Anyway, we need to get connected to services, and I can't seem to. Little frustrated here.

 

[BusynMember]

Hi there. I see you've posted before, but (I apologize) don't remember your story.

I think the red tape in social services is horrible. If you are working only with them, it's normal for them to mess up. Now a lot of services can be gotten through the school district. I don't know where you live...in some states you can access help even if you homeschool (that is not the case in Wisconsin, where I live). However many states do that.

If you are not counting strictly on social services, I strongly recommend accessing the nearest university hospital/clinic (even if it's a few hours away) because they will have every type of professional you could need right in the same place and, if you don't have insurance, they will take Medicaid or else possibly work out a payment plan. Also, they tend to be on the cutting edge of treatment. I would go to the university medical center first...and do try to get a diagnoses. The Autism Society could be a great resource for Aspergers. I don't know if you need a formal diagnosis or not. Is there a reason why you don't want one?

 

[jal]

My difficult child was hospitalized at age 5 during a medication wash. The way we received received services was 1) we contacted DCF VOLUNTARY Services ourselves. After sending us a large packet of info which we filled out and sent back we were accepted. We had access to respite (which we did not chose to use) and summer camp funding and a few other programs, that we got to choose. Because we were involved with them and with help from the hospital we got into a program called IICAPS supplied by our local Child & Family Agency. We would have in-home sessions with 2 workers 2 times a week. Mostly worked with difficult child one on one (I'm not even elaborating on what we'd tried since he was 3). We did that program for about a year. It helped him (he was young, he's now 9) and basically his diagnosis is ADHD/ADD combined for which he cannot tolerate stims.

If you haven't I would try DCF Voluntary.

 

[DaisyFace]

Oh yes--JAL has a great tip!

We found all kinds of leads by calling DCF and asking for help....

and though not all of those leads panned out, it was at least a start.

 

[rejectedmom]

Your county mental health department is a good place to start. Ours is terrific and even has counsiling services available on a sliding scale. Universities are also good resorces. The SD will only give the minimum so I have little conficence in them. The ARc is for MR not mental health issues. Perhaps you might consider a trip to Kennedy Krieger Institute. They are very good at identifying MH issues and both providing services or recommending them. Also NIH. They do alot of work with autism, and other behavioral issues. They even have campus housing where you can stay while being evaluated and getting services. -RM

 

[DDD]

I can't offer any new information but I sure am glad that you'll have the neuro/psychiatric. Yes, they are very expensive. When time is not a big issue the school system will usually pay what your insurance doesn't cover but it takes a year or two around here. With the concerns about your son you don't have that much time. I'm wishing you the best of luck and will keep my eyes out for future posts. You are doing a fine job. Yes it is frustrating, often expensive and always time consuming.

One other suggestion just came to mind. Sorry, I've been there done that for so many years I forget steps that were valuable in the past. Every single time you call anyone or any agency write down their name and number. Then...be sure you ask them for suggestions on who you might contact next. I got some hugely helpful hints from people who were not themselves in a position to help me with my needs. That book of names and numbers should be guarded, lol, because often a year or two later some other issues come up and you have your own spade work done. Good luck. DDD

 

[buddy]

You are doing the same dance many of us have done and it does pay off so dont despair! Yes, the ARC does not do mental health however if you get a diagnosis on the autism spectrum they will help with that. They used to be called A=association R=retarded C=citizens. NO longer, they are now just the ARC

In our area (and I think I have found similar in lots of states on the web) I have looked just under social services and from there developmental disabilities or mental health. Here the social workers/caseworkers then help manage finding funding and services. Once my son switched from a daughter waiver to a Traumatic Brain Injury (TBI) waiver we started being case managed through public health nursing. I would call Public Health Nursing too even if again, they may not directly be able to help, they may know where to go.

As far as the waiver goes...He has to be on MA and they always say there is a long wait. That is true everywhere right now. But each political season becomes a new day and for those of us who have kids with life long disabilities.... a ten year wait is at least a wait. These waivers can follow them into adulthood so just go ahead and tell them that is fine, I want to be on the waiting list. If they are not on ma there are ways to get into it even if they have insurance, it can be a secondary insurance etc. There is usually a parent co-pay then but it is cheaper than paying straight out for the services the waiver covers. (the year my son got a waiver, mn had extra funds that came from something...I cant remember, and for a while they said anyone on MA in the entire state who wanted a waiver, send in this form...nearly everyone got one. So it can happen if the economy gets better in five years or whatever, you just dont know)

There are other programs other than waivers, like family support grants, community grants, etc... that is why you need to find a case manager... so the ideas given are to call the county...can call child and family services as people suggested below, can call public health nursing, or mental health, developmental disability case workers.....

Bug the heck out of them, it is worth it.

 

[JJJ]

If you'd be willing to post your state, someone may know of a service that could help.

In Illinois: http://www.illinois.gov/ Best of all -- it is free!

 

[Wiped Out]

For help with extra insurance and services we applied for Medicaid through the Katie Beckett program. It is a bit different in every state. Here in WI difficult child's mental health issues are so major that he qualifies. They look only at the child's income and not the parents. It pays for all of difficult child's copays (we do have other insurance) and some things like a sleep study that weren't covered under our insurance.

We also ended up applying voluntarily for a program that is usually court mandated. It provided us with respite and was great while it lasted. However, they only usually keep kid 18 months, they kept difficult child 28 months but then gave us the boot!

 

[confuzzled]

i would call the social work dept at the psychiatric hospital and ask them to assist you and maybe make calls on your behalf about the need for services....it might get you nowhere, but in my opinion, its their JOB.

*they* should help you get services in place...and *they* should theoretically be able to do it much faster and easier than you can. a call from a sw should help cut through some of the red tape for you.

its worth a try.

 

[Otto von Bismark]

daughter, Traumatic Brain Injury (TBI), and MA -- I looked those up in the abbreviations glossary and didn't see them. What are they?

Also, I have no reason to avoid a formal diagnosis. I want to know what we are dealing with, so we can set him up for success.

We are in Florida, and we have a medication-Waiver program here. Don't know if that is state or national. New restrictions say you can only use it if you have diagnosis of autism, not Asperger's or Pervasive Developmental Disorder (PDD), unfortunately. After doing the parent questionnaires last week with his testing, I am pretty sure he will not end up with Autism diagnosis, if I can informally guess based on the number of "no's" on the autism questionnaire, and the number of "yesses" on the Asperger's one.

We also have BNET -- which is behavioral health component of state kid's insurance. I have heard there are no income restrictions on that. We aren't rich, but we make too much for subsidized state insurance for kids. I have left a few messages with their machine so far.

I will be doing a lot of the things you all have suggested. Thanks! Great ideas as usual.

Just a note: he went last night to another phase of testing, where the doctor left him alone in a room with two booklets. (!!!???)
One was a "never, rarely, sometimes, always" and the other was T/F. He shut down mid-way and stopped doing them. The doctor checked on him a few times. At one point he was on #145 in a 275 question booklet, and when the doctor came back 40 minutes later, he was on #146, and was reading one of the books on the doctor's bookshelf.

Also, after asking me about the test, he thinks he may have answered a number of questions wrong, which is why I think he got stuck and stopped. He said the first test had a "never, rarely, sometimes, often" scale, and the second test was just true or false. He, being precise with his language and very concrete when dealing with instructions, didn't know what to put with a statement that read something like, "I like to hurt other people's feelings."


He didn't know he could answer true if he only sometimes felt that way. He said there were a lot of answers that he answered false because he only sometimes felt that way, and there was no choice for sometimes.

I think the doctor was overestimating my son's capabilities, like everyone does when they see him. He is 13, really tall, acts super nice and agreeable and with it at first. But he shuts down after 15 minutes of work, esp. if he thinks it is insurmountable work (like a 300 question booklet). I can count on one hand the times in his life that I have left him alone to complete a task and he actually completed it.

I feel bad for my kid. He hates testing, and I don't know if he shuts down because he won't or because he can't.
We have to go back tomorrow. I wrote an email to doctor asking to consider switching up his testing approach, as well as having him start over on the entire test. We need to be accurate. Of course, every time I go in, there is a $45 copay! Ouch. I have no more co-pays left in me, after these past few weeks. I need to sell some plasma at this point.

 

[buddy]

sorry, daughter=developmental disabilities
Traumatic Brain Injury (TBI) is traumatic brain injury
ABI is acquired brain injury
MA is medical assistance some have medicaid

for kids with disabilities they can get medical assistance of different forms (there are several one listed below someone said another is TEFRA-dont ask me what that means, I forgot but it is medical insurance for disabled kids that parents can pay for on a sliding scale I believe, someone else here may know better)

This does not mean you are on welfare or anything. It is for the child. If one needs financial assistance such as general assistance/welfare parents wont have payments and may not have co-pays depending on your state.

 

[buddy]

Re: assessment protocol your son is filling out. Remind son that this is NOT a test. It is just a questionairre and there are no wrong answers. Everyone who takes those (even me...I have done them feels like a million times for my son) gets frustrated because they make similar statements in different ways and then you doubt yourself. Fact is, that is how it is standardized and people who are too consistent or NEVER tease or NEVER hurt feelings are not normal really.... the score patterns will point out if answers are unreliable due to not understanding or even lack of cooperation. There are many ways to get at what they are asking for though. It is not timed and he could do 15 minutes on/15 minutes off/game boy/snack etc. Or he could just do a simpler kind of assessment protocol.
Mostly, if you can help him to see it is not like a school test that may help. Dont even call it a test. Just call it a questionairre.

 

[cfa3]

I too am in FL. Im sorry but what is your child's diagnosis? It is hard to get on the medication waiver and keep in mind they do NOT cover mental health like hospitalizations, residential treatment etc. My son is on the medication waiver and the only thing it really has to offer at this stage is a behavior analyst which has never helped my son b./c of his needs and respite. I see I am a bit late on this thread but have not been on here in a while. FL is not the best state for services but I have been here for a long time and if I can assist with any questions pls feel free to message me!