What are good mental health services?

[amo_mea_filiis.]

If possible, can this not turn too political?

 

I know that mental health help around here and in this country is terrible, but what are our options? What exists in countries with good care?

 

I know that the biggest hurdle with my son is a lack of appropriate diagnosis. I still firmly believe that an ABA program with strong providers and therapists would greatly help him, but that's not available in my area.

 

On the other hand, when we do figure out what's going on with him, how do i support him? Whatever the label, it's his brain. An underdeveloped/low/damaged cerebellum, bad wiring, mild brain damage, are all good diagnoses, but gets us no where.

 

At only 8 years old ive considered inpatient treatment twice, but how could they possibly handle him? What if they medicate him to treat increasing bad behavior when that behavior is increasing due to an asthma flare. How bad will his breathing get before they realize he's sick? What about his language? What if they think he's holding back talking when he's really not capable of conversation? What happens when he goes off in a rage over being told to shower simply because he's too embarrassed to let anyone know he can't shower by himself yet? Will he get in trouble for wetting the bed? What does "getting in trouble" even mean?

 

If we lived somewhere with good mental health services, what does that look like?

[Mergath]

I don't know much about mental health services in other countries, but for us, the biggest problem is the cost of the meds. Dh is bipolar and is on three different kinds of medication. I have OCD/depression, and I'm on two. Even with insurance, the cost is insane.

 

I remember that the med dh was on before his current one was $500 a month. He had state insurance then, thankfully, or he would've had to stay crazy. There's no way we could have paid for that ourselves. And it's a fairly common med, too.

 

I think the medication is a vicious cycle. You can't afford to stay on the meds, so you're too unstable to go out and get a decent job to pay for your meds.

[amo_mea_filiis.]

I'm very sorry for everyone with insurance problems.

 

My son is on ssi which comes with medicaid. If something is not covered, I've been able to request medical necessity authorizations.

 

My problem is that i dont even know what to look for anymore.

 

The next step up from the services we currently have is a complete focus on the parents. 2 people come in and work with us, but they work on parental skills like reading to your child, playing with them, and a few other things. I was told that these services would be useless because the things they work on are not our primary problems.

[Ottakee]

For us, a GREAT TOP NOTCH psychiatrist that was willing to start working with us before my daughter's 3rd birthday has been key. That along with the pdoc looking at other medical issues/causes and a top notch neurologist. I have doctors that will listen to me and really work closely with what we need.

 

It is hard though as this summer we had a situation with a foster child that NEEDED inpatient services but by the time we would get to the evaluation he wasn't an IMMEDIATE danger to himself or others so they said NO. After 3 evals in 24 hours and unknown costs in police, social workers, ER, psychiatrists, etc. he ended up in juvenille detention----NOT where he belonged but he was safe and so were others. Finally after time there he is getting some help he needs.

[pdalley]

I'm in favor of a more individualized approach. That will be more expensive so some will balk but I'm not sure it would be if you take into consideration all that is being spent now dealing with the repercussions from ignoring it until the person does something to break the law.

 

Yes, the old system of hospitalization did not work for most mentally ill. It needed to be improved for those who do need it - for sure. Some people need long term care, some community support and some outpatient. I'd like to see treatment teams - better parental support - no - 'here, this is your child, he is 'fillintheblank' have a nice life' Families need to be directed to supports (and there need to be more supports) and resources after diagnosis to determine what the best course for their situation is. It isn't unlike regular medical decisions for the elderly. What do they need?

 

This is rambling and vague. I have a picture in my mind of what I think would help the most people but I am having trouble articulating it. I just am very adamant that a 'one size fits all' approach is the worst thing that can happen.

[Elizabeth in MN]

Mmm, there are many layers to this. I am currently getting good mental health care. I have a psychiatrist who listens to me and has me on medications that work with minimal side effects. My talk-therapist has experience with non-military related PTSD, which is like finding a needle in a haystack. Last week I told her that I am amazed at her talent to figure me out because PTSD is so individualistic. The next blessing I have is that my medications are covered by mu insurance. My one complaint is that I can only get a one month supply and driving to the pharmacy once a month can be a pain and can lead to a day or two of missed medications.

 

My dd would be better served with people who have more experience and knowledge. The knowledge base here for ADS is pretty limited and there is a a formulaic response to it. Her OT has no idea what to do with a teen girl with ASD. It's... stressful.

[Χά�ων]

My biggest beef with the services where I live is that they medicate first without even considering if there might be an underlying medical condition and the mental health problems are a symptom. A friend was misdiagnosed for years before they found the underlying medical problem. He needed a lot of help coming off the medication and dealing with family who could not get past the mental health diagnosis and treated him horribly as a result. Very sad. And since he ended up as an in patient on more then one occasion that was one less bed that was available to someone in need.

 

 

I am sorry if I am vague but I wish to respect my friend's privacy and not post any more details.

[Hunter]

Until things are paid for differently, nothing will change. And that's not going to happen any time soon. Europe funds their services differently and it pays for their services to be efficient; here it pays to toss the hot potato.

 

Then there is also the issues of training. Training is abysmal.

 

I have complex and severe PTSD, and carry a prognosis of "severely disabled" and "not expected to recover". I have friends, neighbors and tutoring students with a host of illnesses. Improperly treated mental illnesses affects every hour of my life, never mind every day. I quit therapy a year ago after putting everything I had into it for 5 years. I just kept getting sicker and sicker and sicker. I may never recover from my illness, but if I continued to pursue treatment I wasn't going to survive. I chose to live. There is not one person that believes I've deteriorated since quitting treatment. Most say I'm better. A few say I'm almost unrecognizably better. I jokingly say I'm homeschooling my recovery. I actually have some fun and productive days now in real life, and I think the vast majority of time I can pass as "normal" while online, where no one can see my startle reflex and constant twitching and I have time to edit my garbled vocabulary. I guess you all are the best judge of that.

 

There are no fixes that fit into the majority American worldview. I expect things to get worse not better. The stigma against mental illness is growing, and the places that the tossed hot potatoes land are getting angrier and craftier. And lately, rather than tossing the hot potatoes, they are often hucking them elsewhere, just to get rid of them.

 

Some days I am so angry I can't think straight. But being angry seldom helps. With myself and those I am responsible for, I have to just take it one day at a time, and use the options open to me the best I can, and just focus on keeping everyone alive and fed and clothed and clean, in that order. Asking for help is a crap shoot, even when it's life and death. More often than not, the person will just be discharged in worse shape than they were admitted, and those of us involved have to deal with that. We call for help less and less lately. We can't afford to gamble like that, with people's health and lives.

 

I think the current statistics say that life expectancy for the mentally disabled is 25 years less than for those without a mental disability. I expect to see that figure start rising significantly, as I see the local hospitals find ways to deny even basic medical and even dental care to the people I know, never mind deny psychiatric care.

 

I have a tiny tiny tiny bit of hope for recovery for myself and some of friends, neighbors and tutoring students. I have no hope at all left in the system. NONE!

[dbmamaz]

i am not convinced that there are services qualified to help a lot of the kids. my son . . . i've done so many different things over so many years, and he is doing a lot better. some of his meds were over 1,000/month . . . when we were off of insurance i got on the pharma company's free program. now our insurance makes us pay 10 or 20 % of the cost, but i can do the expensive ones through mail order where its only $25 for three months worth. and i was very relieved when the risperdone went generic!

 

my daughter tho - she was hospitalized for a suicide attempt 3 weeks ago and let out with nothing but a promise to make a counseling appointment - which she made and then cancelled. It is driving me nuts, but i think i might have ot put so much effort in to dealing with my 20 year old that it will severely impact my ability to homeschool the boys

 

idk, it sucks. a lot of if, i think, is educating yourself as a parent in all the possible ways to help your child and start trying them. including, obviously, the right meds. NOT adhd meds!!

[LibraryLover]

I don't understand why services vary so wildly in the US. I have a close 5 yr old relative who receives 25 hours of ABA a week, , in dc's home (through the public school) which is 100% covered by insurance (MA). Autism is an issue on one side of the family, so there are 3 other relatives (2 teens, one young adult) receiving care without cost to their middle class parents. (All MA residents.)

[amo_mea_filiis.]

I don't understand why services vary so wildly in the US. I have a close 5 yr old relative who receives 25 hours of ABA a week, , in dc's home (through the public school) which is 100% covered by insurance (MA). Autism is an issue on one side of the family, so there are 3 other relatives (2 teens, one young adult) receiving care without cost to their middle class parents. (All MA residents.)

 

We did not get ABA in NY (where it was available) because i could not get autism put on his early intervention or preschool plans. I spent all my energy fighting for the label because that's what mattered in NY. My son does not have autism, but at the time he was diagnosed by a neurologist and developmental pediatrician, so he should have received those services.

 

The other reason we got stuck was that ABA is now almost exclusively used with lower function autistic children. Yet research and studies show that higher functioning kids benefit even more and it should not be exclusive to autism. We should have had access to ABA. We should still have access to ABA.

 

 

[amo_mea_filiis.]

He did get *some* services. Early intervention can even claim that they tried. I had a quack parent trainer, and just before he aged out, a mommy and me group.

 

In preschool he did have speech. However, the therapist worked on the /s/ sound for an entire with a kid who barely had expressive language!

 

Kids can get some great services when their diagnosis is not arguable, like Down syndrome. Not to say that all kids with Down syndrome get great services, just that the parent doesn't have to spend 90+% of their time debating over a friggen label or diagnosis.

 

Without a fight, very needed kids get the bare minimum legally required. Once a parent has to fight, it's all over (usually).

 

We currently get mobile therapy. Ds is supposed to have a therapist here 3 hours per week. That 3 hours does allow for some paperwork, but it does not an hour each week.

 

I have a love/hate relationship with his new therapist. I love him because he's a big guy and is not phased at all by this little 8 year old with a sail sailor's mouth. He sees that dd does antagonize, and that while ds spends a lot of his day spewing verbal vomit, he's not a true risk to himself or others.

 

I hate the guy because, just like the other therapists, he's not done anything with ds. He's supposed to be teaching him coping skills for things like his sister BREATHING! Lol. Ok, not really funny, but you know what i mean.

 

We have yet to have him here 3 hours in a week. If i don't get in touch with early in the week, i may not see him. He wasn't here last week. And i doubt he'll be here 6 hours this week.

 

I also do not like the guy because he's hung up on the diagnosis. He sees an aspie kid, but not consistently. If its a mood disorder, meds should be on board. But nothing is consistent with ds, except the inconsistencies.

 

I hate these services because ds's psychologist will approve 10 hours per week of TSS services. A TSS is someone who is supposed to assist me in following through with the plans made for ds by the therapist. There is not a TSS in the company who is up for the challenge that is ds. The TSS is not schooled in anything behavior related. Our best TSS ever happened to have a degree in speech pathology.

 

This is getting to be a service bashing post, sorry. I just really have no idea what I'm supposed to spend my energy on.

 

 

[Murmer]

We did not get ABA in NY (where it was available) because i could not get autism put on his early intervention or preschool plans. I spent all my energy fighting for the label because that's what mattered in NY. My son does not have autism, but at the time he was diagnosed by a neurologist and developmental pediatrician, so he should have received those services.

 

 

This is part of the problem...there are certain labels that are recognized and thus able to get help more than others. DD currently has an ADHD label but I fought for an autism label because then we qualified for ABA, social groups, speech therapy and for parents support groups. We got a provisional which did get us speech but nothing else. That got removed and we are left with ADHD and no help other than give her meds. Thankfully we have an insurance that grants a lot of OT and that has been her saving grace but many insurances don't cover as much. Also there is no other supports being offered us. It seems that the label rather than individual is more important in our system. The other thing is that many of us parents recognize our child had needs at an early age yet mental illnesses typically are not labelled until the child is older (IE I was told we would not get a known diagnosis until teen years until then is a behavior disorder) so how can we treat something so generic as a behavior disorder. I do hope that people keep talking about the failing of mental health in our nation so hopefully someday no one will be left hanging with a child with mental illness.

[Kathryn]

I don't understand why services vary so wildly in the US. I have a close 5 yr old relative who receives 25 hours of ABA a week, , in dc's home (through the public school) which is 100% covered by insurance (MA). Autism is an issue on one side of the family, so there are 3 other relatives (2 teens, one young adult) receiving care without cost to their middle class parents. (All MA residents.)

 

It's entirely up to states what they want to fund or require insurance companies to pay for. In my state, there is some sort of exemption for paying for services that my husband's company can take advantage of. I'm in SC and we just got to the top of the waiting list for ABA after two years. In the meantime, my son has become increasingly noncompliant and violent in his tantrums/rages and increasingly stronger, to the point that I'm starting to get scared of my not being able to live in the same house with him in a few years. Like that article that's been circulating, he's as sweet and smart as can be, but there's no telling what will set him off. We've been waiting to get into the developmental pediatrician for a year now. Because the doctor who diagnosed him (for which we waited a year) left the practice, we were put back at the bottom of the waiting list for the practice. We have referrals to psychiatry and neurology, which are both months-long waits and neither of which specialize in his issues or even in children (and the psychiatrist we've been referred to is Indian and educated in India, and I'm frankly concerned about how my son is supposed to communicate with him when he has a hard time conversing with native speakers). There simply aren't the same funding or the same resources available in different areas of the country.

[MBM]

I would want a mental health provider who has studied neurobiology pretty extensively, someone like Dan Siegel. If I had an autistic child, I'd probably follow Michael Merzenich.

 

If you want to learn more about Siegel's methods, his website offers free online courses, videos and other helpful resources. He's also written at least one educational textbook and several books that explain how he treats people in his practice and why he chooses certain treatments over others.

 

www.DrDanSiegel.com