Advocating for change re. our difficult children

[klmno]

As most of you know already, I have been mulling over how to get my hostility out and how to turn it into an activist's way of advocating for change when it comes to our difficult children, for quite some time. Here is my idea- I'm thinking of starting a petition, or maybe a series of petitions, that would cover various "changes" that would surely help a lot of people. For instance, most professional's boards really hold the professionals accountable while still understanding that no professional is always going to be 100% successful in achieving every client's goal. But in the MH profession, most of their boards only look into complaints about inappropriate relationships with clients. I've not seen any that check into MH profs who claim to treat childhood depression in children (just as an example) and really have NO client that has improved or in some cases, they don't even have a hx of treating clientele with this problem. So one issue would be for boards overseeing MH profs in various states to be required to hold their licensees accountable for what they are advertising and professing they do.

Another issue, just as another example, would be for various states to stop allowing local juvenile courts and court authorities to be exempt from legal accountability and responsibility for bad decisions regarding our kids. And they need some limits put in place when it comes to what they are allowed to order a parent to do. A parent who has no cps involvement has parental rights; the governement has no right to 'order' me how to raise my kid or run my household, in my humble opinion. Also, I think it should be illegal for court appointees to lie or misrepresent the facts to parents of juveniles involved in their system and I think parents should have the legal right to see EVERYTHING in the kid's record, the same as they do for sd and medication records, as long as the kid is a juvenile/minor.

Another would be for a federal law to be implemented that requires more accountability from state djjs if/when they are accepting federal funding. IOW, they can't use all the funds just to hire more people to "monitor"; they would have to show proof that they are using the funding for 'real' services for kids and families- not blame and legal action but real services.

These are just my initial ideas but before I pursue this, I'm wondering what the 'experts' here think of it and if it's something you think would be supported by a lot of parents of difficult children. To clarify, whether it would be one petition or several, the goal would be to advocate for change in state MH boards, state and local govs (obviously requiring support and intiation from people in various states), and implementation of federal law(s) to make sure state govs cannot continue to put juveniles/minors/families of difficult children at the bottom of the priority list or take funding to hire more idiots then claim they need more funding.

Any thoughts, suggestions, opinions are welcome.

MOds- feel free to move or copy to General if that's where this should be. I hope I didn't overstep political boundaries.

 

[DammitJanet]

I think maybe you should focus on one area and go for that alone. The one that might have the greatest chance of being able to be passed is the MH one. They are so focused on goals anyway that I dont think it would be that difficult to implement some form of accountability so that clients can access records showing how many patients a doctor or therapist has treated. Or maybe percentages. There is no surefire way of showing a success rate of course with mental illnesses but a psychiatrist could show that he/she has been in practice for 15 years and has treated 3200 patients ranging in ages between 4 and 69 with the diagnosis's of xxx with the average length of time in his care. Im sure it could also be linked with a drug database which could list the most commonly prescribed medications.

 

[Liahona]

I think you should start in DaisyFaces area. They just need a bunch of warrior moms with anger issues to "help" them. There is so much that needs fixing I agree with Janet just pick one thing at a time. Then go for it. You'll have my support.

 

[klmno]

There's DF, Step, me, and a host of others here that have suffered from this and watched our difficult children continue to worsen as a result of idiocracy. That's not to excuse our difficult children or to convey that our difficult children would be 'cured' if these things changed, but a lot of money is being spent on bogus koi while agencies claim they have no money and the things these agencies are doing are things they have been doing for years that have no proven success rate. They aren't working and any time these people (agencies/governments) get more money, they throw it all at doing the same koi. We already know that stuff doesn't work. And they can't be held accountable.

DJ- re. MH boards- I was thinking it should be more like the other profs' boards. For instance, a person can look online and see any complaints and board action against a licensee, and they can with a MH prof, too. In some cases, of course, the complaint turned out to be invalid and the prof retains the license with no reprimand or consequence. Usually, for most boards, these complaints aren't looked at too hard unless there are several complaints against one person or someone has been hurt, physically or financially, or mentally. Examples- say an electrical engineer has spent 15 years working at a power plant on energy systems then claims he can do all the electrical design for a huge building. The electrical system he designs fails and a complaint is waged. The board looks into it and finds the engineer never had any experience doing a complex electrical design for a building, even though his education alone might have allowed him to- he misrepresented himself and practiced outside his area of competency- he's in trouble. A MH prof could do something similar (and they do many times) and people don't know they can complain and their board wouldn't do squat about it if someone did complain. If a family physician only successfully treated 15% of their patients, they would be in big trouble for being incompetent. I would be shocked if MST tdocs have a 15% success rate but no one seems to care. They blame the parent and/or the kid. Who else blames the client when their advertised treatment fails? It's not all that hard to find out a rough idea of how many cases an attny has won or lost. Why can't a parent or any person find out a rough idea how many clients (what percentage of clientele) a MH prof has successfully treated?

If you check online for complaints at various prof's boards, you get things like I just gave. But if you look at the MH prof's board list of complaints, I bet you only see complaints/ actions against a MH prof who had an inappropriate relationship with a client. That tells me that this is the ONLY thing that board cares about. I can't tell you the times I have experienced calling a therapist asking them if they have experience in ABC or can they help with DEF problem, and they tell me they can, only to find that they are really a spiritual advisor or whatever and really have no experience whatsoever in what I asked about.

 

[DaisyFace]

Well, just my opinion....

but I don't think petitions for more oversight boards will accomplish much. The trouble in my area is lack of options for folks on Medicaid. So even if a Oversight Board said "Well, Dr XYZ has a lousy record" - so what? There is still no other choice for kids on Medicaid--but now we're spending money on a lousy doctor and a professional board to TELL us he's a lousy doctor.

Instead, I think parents need to demand alternatives:

Alternatives to pill-pushing solutions
Alternatives to "let the parents handle it"
Alternatives to "systems" that allow kids to shuffle from one thing to the next without any kind of continuity or chance for real progress (well, you're done here - next!)

That would be a start...

 

[klmno]

I was hoping that's what the other ideas (if ever implemented) would accomplish. In this state, I hear the "we have no other options- funding is a problem" time and time again, but I see idiots hired, the same koi being tried, difficult child sent to Department of Juvenile Justice where I hear the cost is problably about $80,000 per year for him, so I'm starting to think - ok beyond 'starting' and moved onto convinced- this isn't about lack of money, this about poor budgeting, mismanagement, and being clueless about what services should be implemented. They are spending this much money per year to warehouse my son in Department of Juvenile Justice but couldn't afford another alternative and yet, expect me to provide the supervision the Department of Juvenile Justice gives, on my piddly salary? There is no logic in this. DF, the MH prof's board already exists in every state- they just aren't doing anything except looking into which therapist slept with a client (adult client- not child molestation).

 

[DammitJanet]

Problem is K...that you cannot solely blame a therapist or psychiatrist for the failures of a client. Heck, you cant solely blame a regular doctor for the failure of patient. Can I blame my doctor's because my joint disorders are getting worse and not better even though I am in their care and regularly go to appointments and do everything they say? No. Part of it is the disorder and part of it is me.

My bipolar is never going to get totally better or go away. Psychiatrists and therapists can do everything in their power and still have cases that wont have good outcomes. My therapist worked her heart out and had a patient commit suicide. It was certainly not her failure. It was not the lady's failure either...I was friends with her too. It was the illness.

This is the difference in this type of board than what you are talking about with professional boards licensing contractors in such things as construction. You can physically see and measure a piece of wood or building. They dont have feelings or emotions. They cant get sick.

 

[klmno]

I get that- and that's why the attny said I'd have a problem ever winning anything in court re difficult child. So, I'm not seeking retaliation. I'm looking more at it like this- no dr can cure every patient, we all know that. But would you take your kid to a pediatrician if you knew they only helped 15% of the kids they saw? I'm saying none of these people (MH profs or courts people) dealing with our difficult children are required to be transparent, for one thing, and the money being spent to throw our kids away is a heck of a lot more than it would take to provide services that probably would help at least some percentage of them. Shoot- what the system has been doing isn't working. Can we not advocate to change it? Board members here can sit here for years and years and vent how upset they are over 'this isn't working', so I'm just trying to figure out a way to improve it for us all, not just my son. Fighting for one difficult child at a time obviously isn't getting many difficult child moms on the board very far along.


I don't think the 'system' is what it should be. I don't want to spend my life complaining about it and not pushing for it to change. That's just me, I guess.

So much for my grassroots effort. LOL!

 

[DammitJanet]

Maybe I am just lost but I have always just dug until I found whatever services I needed to access. Maybe I was lucky and we got in at a good time in the time period for mental health. I dont know. It sure seemed like I had to move heaven and earth to find the program I ended up getting Cory into. I spent months on the phone during my lunch hours calling places and getting names to try. If one place couldnt help, I would ask if they knew someone else to try. I spent years in therapy with Cory. We had our fair share of different types. If I didnt think one was doing well, I just asked if we could try another. I was never denied.

I dunno. Maybe things are or were just different here.

 

[HaoZi]

Medicaid is much more limited these days I think. Less doctors accept it and it covers less overall as well, especially in mental health. Here, there is ONE pediatrician in our county that accepts it, and I don't really like him. There is ONE psychiatrist that travels to our county that accepts it (and none with an office in our county), and I will no longer take her to him. The ones in the surrounding counties that accept it have such limited hours available and mostly the same "She's just defiant" attitude - or at least among the ones that accept her insurance.

 

[InsaneCdn]

JMO, of course...
I'd skip the oversight stuff completely.
Instead, see what you - or some really good reporter working with you on this - can find out through "access to information" requests...
You're not going to ask for individual records, here... you're going to ask for budget info, and statistics... how many clients served, how many of what dxes, what services provided, at what average cost, some measure of success, ...

Of course, they do NOT want you to see or know this. They don't want ANYBODY to see or know this. But you will accomplish far more change, far faster, if you can prove that the approaches being taken are costing as much or more than effective alternatives.

Anyone on the political front loves to jump on opportunities to get more accomplished, without spending more money. Everybody wins... except the stupid bureaucrats who couldn't figure this out in the first place.

This is NOT a fast process. It may take you 2-5 years to even GET the data. But if you really want to change the world... You've got to hit them where it hurts... which is "public image".

 

[Liahona]

So much for my grassroots effort. LOL!

Don't give up! Yes, that part might not work. But, I would really like to know who around here specializes in what. I would like to know if a therapist is a total flop. There are bad ones out there. No, the good ones aren't going to magically fix everything, but they won't have a huge turn over rate of clients either.

There are other things that need to be fixed and it sounds like you have ideas of what they are. Better training, retention of good people in the system, using best practices, ect...

I meant it. You have my support.