Very, very bad meeting...

[DaisyFace]

After the last meeting a few weeks ago, we were scheduled yesterday to meet with our caseworker's supervisor to develop a TSP for difficult child...

We arrived at the meeting to discover that supervisor was sick and would not be attending - but the RM (Regional Manager) would attend the meeting via telephone. So the meeting was husband, myself, caseworker, therapist and RM.

We began by reading my bulleted list of concerns to RM. Then when I began to say that the services we were hoping for were...

RM interuppted me and asked husband whether he agreed with my list of concerns. He said yes - he agreed with everything I had just said. He'd seen all the problems first hand and something needed to be done to help our family. He even mentioned the article that Witzend had posted in Watercooler about the boy who was angry after an argument with his mother and killed her while she was sleeping. husband told RM that he didn't want our family to end up another statistic and we'd like any help we could get.

RM asked a few questions about difficult child's behaviors - wanted to know about threats, violence, when was the last time the police came out, when was the last time difficult child made a threat, when was the last time difficult child did something inappropriate, etc... I read to her from police reports, school reports, even difficult child's own IMs where she talks about wanting to kill me.

I explained to RM that we seemed to be reaching a dead end. difficult child was not making progress in regular therapy, psychiatric hospital will not treat her any more, all the professionals seem to be saying that difficult child needs residential treatment and they referred us to the state program.

This got the RM upset. She said that they are not supposed to do that. Their program has nothing to do with providing treatment - they simply FACILITATE treatment.

RM asked caseworker what had been proposed at the last meeting.

Caseworker stated that she had proposed a person to help us create a behavior chart.

I said that my problem with that is that the behavior chart would not address any one of our top ten concerns. In fact, last year's behavior chart was the reason difficult child gave during one of her IM sessions for wanting to have me poisoned. Without getting difficult child's other issues under control, I would not be able to enforce a behavior chart. I said that we could not set up a situation in which it was difficult child vs Mom or difficult child vs the family in the implementation of this chart.

RM was clearly exasperated at this point. "So...." she said almost sarcastically "You would prefer to do nothing?"

I said "I would prefer not to be killed in my sleep."

RM began very angry at this point and directed her comments toward the therapist. She wanted to know why the violence and other issues were not being solved during therapy.

therapist explained that difficult child does not participate in therapy. It's difficult to solve issues that the client refuses to asknowledge. therapist recommended Residential Treatment Center (RTC).

RM wanted to know what the treatment team thought.

Treatment team? Well, here's where the meeting really went downhill. Because difficult child is covered by Medicaid - our only choice in MH treatment is the County MH Agency. County MH has three offices to serve the entire county. There are only two psychiatrists that treat children. One psychiatrist is located at the center office and the other psychiatrist travels between the three offices. He is at our office only one day per week. Therefore, the only person that difficult child sees regularly is the therapist.

RM said that the treatment team should be meeting about difficult child at least once per week.

therapist tried to explain that there is no treatment team.

RM demanded to know when difficult child next sees the psychiatrist. When she heard mid-April she seemed stunned. That is unacceptable! She said. difficult child needs to see the doctor a lot more often than that.

therapist explained that doctor is booked months in advance.

RM said, well what about the crisis doctor then?

There is no "crisis doctor".

Well, which doctor will difficult child see when there is an emergency?

She won't see a doctor. She will be referred to crisis center/ER and then scheduled to see doctor at his next available appointment. Openings are available in June.

RM said well difficult child needs to see doctor a lot more often. The treatment team [there is no treatment team] needs to meet about difficult child at least once a week. The treatment team [there is no treatment team] needs to decide what will be the next step for difficult child. If the team [there is no team] indeed decides that difficult child needs residential services then the team [there is no team] needs to forward that information to the office's account manager.

This office does not have its own account manager. There is one account manager that overseas the finances for all three County MH offices. therapist has already discussed Residential Treatment Center (RTC) placement with the account manager and has learned that there are no funds to place kids in Residential Treatment Center (RTC). Period.

therapist tried to explain this to RM.

RM told her that funding is not her business. She needs to have the treatment team [there is no team] handle treatment and the account manager handle funding.

Well, the reason there IS no treatment team, and no "crisis doctor" and no support groups or summer camps or workshops or anything else is that the County MH offices have had their budgets slashed.

RM would not address the issue of funding. She said any referrals to Residential Treatment Center (RTC) needed to come from the treatment team [there is no treatment team]. Then the treatment team needs to send their recommendation to account manager. Then account manager will meet with caseworker who will help account manager find a residential facility.

Problem is - referring agency is responsible to pay 1/3 of the cost of any referred treatment, including Residential Treatment Center (RTC).

County MH does not have the funds to pay this. Therefore, County MH will not refer.

So it doesn't matter whether therapist, psychiatrist or a whole team of docs recommend Residential Treatment Center (RTC) - County MH does not have the funding to pay the required 1/3. Period.

So our meeting ended with everyone feeling frustrated and angry.

Except for caseworker - who spent the entire meeting just sitting there with a vacant expression on her face.

I'm exhausted with stress and frustration...

 

[klmno]

You would thunk the RM would have already known this kind of stuff, huh? This is sounding more and more like the circles I went thru with people when I was trying to get my son help before he pulled a knife on me and ended up in Department of Juvenile Justice. I don't know about your state, but if it's similar to mine- you half a tiny bit of hope, maybe. Let me tell you how it worked for us- any psychiatric hospital difficult child had been in was private and being paid for by my private insurance. They could (and did) recommed Residential Treatment Center (RTC) but couldn't make it happen. They recommended getting county MH involved- it sounds like this is where you have gotten to. About that time, I had to get difficult child on medicaid. Once on medicaid and sent from juvy, difficult child had no choice but to go to state run psychiatric hospital. That psychiatrist could and did sign the neccessary form ordering Residential Treatment Center (RTC). I would recommend that route for you- try to get her in a state psychiatric hospital instead of a private one. It still fell thru with my son because the form had to get final authorization from the MH dept where he was a resident and they refused to sign because PO told them not to. I'll never understand a MH prof who lets a PO's direction over-ride ethical practice or a psychiatrist's direction, but I guess that's where the clique and funding come into play. Anyway, you'll probably still have to battle the local MH people to give final authorization, but what you need first is the psychiatrist's sig on that form. Also, once difficult child had been in that state psychiatric hospital for 6-8 weeks, he was transferred to a different level of medicaid coverage which would have paid more of the Residential Treatment Center (RTC) cost than it would have otherwise.

 

[DaisyFace]

K--

Medicaid has changed its rules in the last few used. Medicaid used to cover Residential Treatment Center (RTC) in full.

Today - Medicaid will only pay 2/3. The referring agency - whether county, state, court, Department of Juvenile Justice, private provider, etc - MUST pay the remainder.

Therefore, the agencies have stopped referring.

The problem is the money - nothing more and nothing less.

Thanks for your support, though....I appreciate it.

 

[DDD]

I'm so sorry. Sending giant hugs. DDD

 

[JJJ]

I would send county MH a certified letter (preferably from an attorney) with copies of any and all documents where a psychiatrist recommends Residential Treatment Center (RTC). I would point out their liability since they KNOW that difficult child is a severe danger to the community and that their refusal to refer to an Residential Treatment Center (RTC) due to the current funding structure is illegal and that the surviving family members will hold them personally responsible for the attacks that everyone knows will occur; that you will sue each person who had the authority to authorize this and did not.

 

[JJJ]

Another option is the next time he goes into a psychiatric hospital or gets arrested, refuse to pick him up. You may get charged with child neglect but a judge may be more sympathetic that this nonexistant 'treatmet team'.

 

[klmno]

I wonder if that's the real reason my son didn't get it then. And the whole time GAL told difficult child that it was my fault he got Department of Juvenile Justice instead. But from what they told me, Residential Treatment Center (RTC) would be covered by sd and medicaid except for a small % due to the way they charge education fees- and sd wouldn't cover that part. I had it and was going to pay it. I told them that in court.

 

[klmno]

JJJ- that might work but you see where my son is spending the majority of his teen years with no MH treatment to speak of. (I hope that didn't sound like I'm blowing off your opinion- I'm not- but at least in this state, we can't sue the agencies. And if someone finds a way to, they are covered- they keep a ton of money in their defense fund and they never lose.) Anyway, my point was that it's the kid's life that gets thrown away when the parent quits doing things their way. But what are you going to do when the kid goes beyond the threats and starts pulling a knife out. I sat there and told the entire county team that difficult child had already done this once and that a psychiatrist had recommended Residential Treatment Center (RTC), and PO refused to allow it. They did NOTHING except it will stay under Department of Juvenile Justice authority because it should come out of Department of Juvenile Justice funding. Now I'm pushing for him to go to a half-way house upon this release instead of setting him up for failure and me potential injury by trying the same exact "plan" again of him living at home on parole.

Sorry- I didn't mean to hijack- just taking another opportunity to vent.

I do feel your pain, DF- as you can see, I can somewhat relate to what you're going thru and I send many well wishes and hugs your way. All I can suggest then is try a different way. I wish to God I could have found a different way before my son started pulling a knife out. Nnow I pray I can find anopther way before he actually cuts someone with it- or himself again.

 

[JJJ]

The grant that Kanga is on is the direct result of such a lawsuit. You can sue a state agency in FEDERAL court.

 

[klmno]

JJJ- is this anything at all related to adoption? My son is bio and from all I have found, the only requirements and grants are for adoption or foster kids, nothing for bio. If you know of any specifics that I could sue that county or any of it's agencies for, please PM me with them. And another problem I had- I couldn't find an attny in this state willing to touch it with a 10 ft pole and I can't afford an attny anyway. OCPA and the agency that sues for equal rights both said I might have a case but neither would take it because they said there were literally tons of peoople in this state with the same story and they couldn't take them all.

 

[JJJ]

It doesn't have anything to do with being adopted but it is a unique to Illinois program. The class action lawsuit alleged that the State of Illinois was violating the rights of children with severe mental illness by not funding their treatment. The result was a federal consent decree that established very narrow, specific criteria that if a child met, they would get Residential Treatment Center (RTC) or intensive community services funded.

The key is finding a group of children who have all experienced the same problems with Department of Juvenile Justice/DSS and then find a law firm looking for a pro bono case.

 

[klmno]

Interesting. I'm not sure how I could go about that but it's food for thought. Interestly enough, both my son and another boy on probation at the same age and in the same county had similar MH hxs and both had just been put on abilify 3-7 days before pulling a knife on the mom. These boys did not know each other. The other boy's family was already being monitored by dss- poverty, custody, maybe some cps concern I don't know- the boys had different POs and different GALs even though tried in the same court/jurisdiction. The other boy got Residential Treatment Center (RTC). Mine got Department of Juvenile Justice.

 

[cubsgirl]

DF,

I'm so sorry you are going through all of this. It's terrible that the "professionals" showed up (or didn't show up) unprepared.

I don't have any words of advice - just a virtual hug ((hugs))

 

[HaoZi]

Gah, what a headwall situation DF. I'm sorry they're so unhelpful.

 

[susiestar]

DF, it is time to call your congressional representatives. Or go see them in person with your documentation and a summary of this meeting that you write and send to the RM as proof of the meeting. Both your state and fed reps/senators. Go and tell them that you very well may be dead by your very sick child's hands because NO ONE will give her the therapy that she needs at Residential Treatment Center (RTC) - and that your other CHILD may also die. ASK if they want the state to be another one in the media for a story like this. LEt it be known that you are documenting their response and actions and will have it arranged so that the media gets ALL of the info and proof if anything happens to ANY member of the family. Also start reaching out to journalists - local state and fed. The stories about kids who kill are big news stories and something like this also might be.

I am so sorry that Rm is a flaming fool and I hope that by going to the fed/state reps and/or journalists you can get some help.

 

[DammitJanet]

Medicaid cuts are all over the news right now in SC. I am not too surprised at this. I am not sure if this would happen in NC or not considering I havent had to go this route in many years. Back when Cory went, medicaid paid it plus he was under a program called Willie M which was a court case similar to what JJJ is talking about. Im sure if you google it there is something still out there in archives.

I would wonder too about having her admitted to a state run psychiatric hospital for a longer term admit. If she is there they may actually know of a placement at a Residential Treatment Center (RTC) that you cant find on your own and it may be sliding scale. That is how we found Cory's. It was affiliated with the state hospital. Supposedly we could have had a fee left after the medicaid paid but I think it was so low they never actually billed us. If you could get in on a sliding scale somewhere and your 1/3 was small enough, you could make payments. I think our sliding scale amount was like a dollar a month so they just forgot about it.

 

[DaisyFace]

Good morning--

Thank you for your support...

Janet--

I have a copy of the state's "Master List" of every single Residential Treatment Center (RTC) facility in the state. On that list, only TWO facilities take parent referrals with with fees on sliding scales. We have already applied to both - and were rejected by both - with each one recommending that we apply to the other instead. IOW - Residential Treatment Center (RTC) A said we cannot take her...please apply at Residential Treatment Center (RTC) B. Residential Treatment Center (RTC) B said we cannot take her...please apply at Residential Treatment Center (RTC) A. The only options left are Private Pay - (which we cannot even pretend to afford) or referrals from other agencies.

Susie, JJJ -

My hesitation with the lawyer/lawsuit/state representatives route is - what happens in my house while I am making noise to have difficult child admitted somewhere?

It scares me...



And I guess that right now - I am feeling particularly fatigued over all this. Too tired to fight...

I need to get a "second wind"...

The maybe I will feel more confident about being able to wage a legal battle without simultaneausly making things worse at home.

 

[susiestar]

Back when we needed inpatient care for Wiz I didn't call our insurance (medicaid) first. I didn't think they had any in patient programs because it was hard enough to find specialists of any kind. I started with a phone book and pad of paper. I called the pastor of our church and let him know the situation and asked if the church had any programs or knew of any. He didn't know of programs but gave me names of other people who might know. I made about 20 calls over 1-2 days going through a brief explanation of what we needed and asking if they knew of any programs or knew anyone who might have info. At this point the dev pediatrician let me know that I needed to call a special # for the insurance (could have used the behav health # but this one skipped me past about 3 people) and talk to them. The person I spoke to was horrified - esp at the fact that NO ONE had even mentioned in patient care before then. She took a bunch of notes, read them back to me to make sure they were accurate, and had me hold while she got a higher up person. The higher up person gave me names of some programs and then told me that she thought the place we should go was X. She explained that they wouldnt' just keep him 3 days and release like most of the others. She had me hold and called the dev pediatrician, the pediatrician, and the psychiatric hospital. THen she told me that she would call in 1-2 hours to give us info on when he would be admitted (either the next day or the day after).

A year and a half later when he was abusing me and refusing to turn in homework and had been hiding knives again I first spoke to the resource officer. He was leaving the house late at night to go "wander" and it scared me. The resource officer (cop stationed at the jr high) gave me a list of programs that his office knew about. It was two pages and had programs that even our therapist wasn't aware of.

When he really went off the deep end I started calling them. Most said that he had to be in the court system before they could accept him. It is one of the reasons we started calling the cops. I also got the phone book out (had lost the list from my prior calls when we moved) and started with our pastor again. At that point I made at least 50 calls to organizations around the state over about 2 days. We have an excellent boys home for troubled kids but he was on the really young side for them. The elem school counselor knew the man in charge and gave me his # and gave him a call for me. So we were working out possible admittance when he went too far and I had to call the police. From there things sort of went on hold because the involvement of the police. To get the programs from the list I had been given years before the court had to order him to go to those programs. I couldn't even get the officers to write up a basic incident report to give to the judge - we had 2 court dates over 3 weeks and the officer kept saying he didn't have the papers to even show they responded to our home. It was CLEAR that they didn't want to deal with this and were stalling to push us into dealing with it for them or giving up and going away. So when my parents asked for him to live with them, and it was made clear that they would go to the judge and lobby for this if I said no (meaning that we had NO PRAYER of getting the court to order placement anywhere else because then they would have to pay for it), it was pointless to keep trying to find a placement. We went ahead and called off the courts and let myparents have a shot at it. It worked, in the long run.

It may seem odd to call a pastor, but many of them have training in counseling and they are often aware of programs to help struggling kids/families. You can also reach out to Boys Town. Some civic organizations also have programs run by the state or national level - the Lions Club has a boys ranch program in our state for kids here and in some neighboring states. Even if your difficult child hasn't been in trouble with the officers at school, go and talk to the school resource officer/cop. They see kids your difficult child's age and often are aware of programs that the cop on the street or in the office may not be aware of.

This may be the only way to find something to help. If nothing else a residential placement would give the rest of the family a chance to thrive - esp your easy child.

 

[AnnieO]

DF - yeah... OK. What Susie said about pastors? Yeah, I'll second that.

OK - what happened here was: Onyxx snowed everyone under. Court, PO, husband, counselors right and left. So I reached out... A friend's spouse's mother had worked at a PHP, maybe she'd know something? husband called her. Got the email addy of a pastor (who we have since come to know - lovely lady). Anyhoo, turned out this pastor's adopted son became violent and ended up in Residential Treatment Center (RTC). She gave me the contact info of the director of the place.

Fast forward about 6 months, and husband has contacted this place and gotten paperwork. I'm working on it too. And... Nothing. Onyxx snows him again.

And to now (about 18 months later). I've done serious digging and come up with a list of (!) seven places in three states that are possibles. husband and I go over the list together and narrow it down to 3 - two in our state, one in another. And the first call in our state, they're horrid. They don't take parent referrals. Yeah. Second call - is the place the pastor told us about ages ago. REALLY NICE lady answers the phone. I've gotten the wrong department, but she transfers me. The director? Same guy as before - leaves his cell phone number on voicemail. I wait on that, just leave a voicemail. A while later, he calls me back - and rearranges his schedule so he can be available for husband and I to visit - this weekend.

My point here is... Susie has a good point about pastors. Even if they're not yours, or you don't go to church. Cause they know a lot of stuff we don't - and might be able to at least give you a direction to go...

And. HUGS!!! I know how you feel.

 

[timer lady]

DF, you were so well prepared for this meeting; you had your act together. Budgets (personal & gov't) have become such a roadblock to treatment for the mentally ill. Many families can't sustain the ongoing never ending treatment needed; the place of last resort, the fall back plan thru county/state/federal help is strained to the brink. SWs are in the middle keeping an eye on the budget while attempting to get help for those who need it most.

Saying the above, I've learned thru all the many meetings I've had for kt & wm over the years is the correct terminology to use during said meetings. I'm attempting to get wm into a program (the only one in the state) for underage offenders. My constant refrain is "unless wm gets this treatment he will end up in the justice system, a far more costly route". I keep it short & sweet; remind the powers that be that wm is in therapeutic foster care with a treatment team of 13 - not a cheap endeavor in of itself. Yet that being said it will be far more costly once/if wm hits the justice system once you start counting the potential victims & such.

We have documentation to support all of the above. AND it's still a very steep uphill battle. The economy has forced many hands, many individuals who need help to go without.

DF, find advocates who know "the system" inside out. Someone who isn't part of that system & start working with that person. The best person you can find is another parent who has been there done that. Someone who understands that mental illness isn't a court ordered sentence but in need of treatment. Negotiate with the RTCs. Offer volunteer services to help pay for difficult children treatment (I offered to clean & scrub toilets at one point with wm).

On top of the above, I know/share your frustration ~ I've been there done that times two. It's not pretty when a parent cannot provide the treatment because of fiscal restraints & cannot find help for their child anywhere else. Gentle ((((hugs))))