Message
Hey all. Considering IOP at Sandstone Care at Rockville for 17 yo DD with depression, anxiety and history of ED.
Does anybody have experience with them? At any location? For IOP or Residential?
Their IOP schedule is for 12 weeks, 4 days a week, 3 hours a day.
They use CBT. Almost all of the time is spent in group therapy. One on one therapy is just once or twice a month. That sounds very odd. Was that your experience with IOP, here or anywhere?
Does anybody have experience with them? At any location? For IOP or Residential?
Their IOP schedule is for 12 weeks, 4 days a week, 3 hours a day.
They use CBT. Almost all of the time is spent in group therapy. One on one therapy is just once or twice a month. That sounds very odd. Was that your experience with IOP, here or anywhere?
Anonymous wrote:OP, avoid psych NOs like the plague. Ditto and even more so for PAs. The worst mismanagement I’ve seen has been psych NPs/paraprofessionals who overreach their ability and training. Don’t you with your kids mental health. I know there is a shortage or MD providers and it’s so hard to find one but truly, if anyone isn’t forthcoming about their direct relevant experience in the field for which you’re seeing them, look elsewhere.
I hear you and sorry it sounds like you have first hand bad experience.
I have one NP appointment Oct 10 as a backup, but I am actively looking for MDs, especially ones that I can tell have a reasonable chance of having a little common sense, competence and has acquired intuition and experience over time...things they don't teach at school. That might just be wishful thinking, but I am trying.
My family may not have the luxury to recover from a bad mismatch.
A poster here gave me a good reference, and I am waiting to hear from Medstar Georgetown MDs that take insurance.
On the brighter side, I had a good conversation today with a consultation service (R3C) my employer pays for. They listened to the history and recommended Intensive Outpatient care (IOP) that sounds reasonable and less drastic than Residential treatment. It was brought up before, but lost in the haze of last few months. They will help find the provider(s). My company's benefits are way above average, and I still struggle. I am imagining quality and network size of my health insurance is also way above average in comparison, which is just outrageous and scary to think about. At any rate, I am not sure how long IOP will take to arrange. In the mean time, I have a few leads.
Anonymous wrote:Anonymous wrote:tabira wrote:Anonymous wrote:Dr. Selassie in Bethesda or Chevy Chase takes insurance, not sure about new patients.
Also, because it sounds like standard antidepressants aren't working, is there any reason to suspect type II bipolar, which is where the manic phases aren't dramatic?
Thank you for the tip. Will look into it.
What is the right diagnosis? That is a loaded question. Kid just went through a neuropsych eval. Got bunch of diagnoses, none new. The psychologist wasn't too sure which are the root causes that triggered or worsened other diagnoses. Clear as mud. Kid was not impressed with the level of due diligence by the doctor. She is super smart and she was right. She wrote a long email to the doc. The doc essentially said insurance pays for only so much due diligence!!
During my search, there was another psychologist I liked with good reputation and a comprehensive approach for neuropsych eval. Couldn't afford her. She doesn't take insurance. I tried to figure out how much the insurance would cover the out of network doc. It was a struggle for a month. Repeated answer from the insurance - they will assess after I file a claim. Is there another world than mental health care that is more bizzarro?
Just want to say I also have experienced the bolded. our health insurance system is a disaster. Families with serious mental health diagnoses become impoverished paying for long term treatment. Sorry I can't offer more than empathy and solidarity.
Ty for sharing.
I don't want to start an ideological war here but allow me a perspective everybody.
As long as most healthcare players are 100% profit driven, and healthcare is one fifth of the GDP, nobody should be wondering why we struggle to keep us and our loved ones healthy and not dead.
Providers/consumers balance of power is completely out of whack. There is no real competition. There is no transparency. Most consumers have no real choice. You have to be somewhere near top 5-10% to have a choice. Seriously, we are between top 10 to 20%, and I am not feeling adequate to meet our daughter's needs. It just breaks my heart to think most folks have it worse. Given the profound uncertainty in life, cruelty of health and healthcare can strike any family/person at any time.
I am all for free market and capitalism, but this is not a true free market. The highly profitable "not-for-profit" hospital systems, insurances, pharma, providers, and every other player in the ecosystem have tremendous power and opportunity. Lately, psych providers have upped their game - local psych MD wants $600 cash for initial and $350 for regular 20 min visit. Why not, people are obviously paying. All these players would be stupid (and punished by wall street, if public) if they didn't squeeze the consumers completely legally (mostly) for maximum profit, although it might frustrate our sense of ethics and fairness. The worst players are only partly visible and unscritinizable - hedge funds and private equity.
This is what we have chosen as a society (or where the politics has gotten us), so we can just scream into the wind forever. Ultra powerful interests that are profiting like it just fine and will make sure nothing ever changes. I am yet to see anybody with the heart, the spine and the might to push back to make it fairer and more humane. In the mean time we fight and loath each other on irrelevant topics.
US has the most advanced, innovative and sophisticated health technology/knowhow in the world. Many of us, quite often, benefit from it. (I know. I grew up far away in a different world.) If only its delivery was more consistent. And not cruel, irrational and inhumane. We thought everybody should be able to use police and firefighters, not only those who can directly pay for it. With healthcare lots of us don't see it that way.
Anyway, I come back to reality. Still trying to keep my kid alive, and relieve her unnecessary suffering. I just have to deal with the system we have. Not the one I want. I would get behind any effort to, may be, you know, fix it.
Btw, OP above, going way off topic.
Anonymous wrote:Try Oxana Jourkiv in Fairfax. She doesn’t take insurance but has openings, I believe. For med management.
I find it’s best to get recommendations and not just call around.
Much appreciate it. I like her bio and the fact that she focuses on children/adolescents. It will take 1 hour+ to get there, but we can make it work. Does your family have experience with her?
We got some recommendations from asking around. They all have not worked out so far, for one reason or another. Most are not taking new patients. Some were unreachable. Emails, voicemails went unanswered. Still open to recommendations. Both for medications and therapy.
Anonymous wrote:tabira wrote:Anonymous wrote:
We ended up sending our kid to residential treatment - twice. It really did help. But like i said in an earlier post, it’s an ongoing struggle. Periodically suicidal and still gets hospitalized periodically - in fact just finished a month long inpatient, two parts of which were involuntary, and as you know it has to be really bad for insurance to pay for a month. Still medicated and not really a functional adult. But still alive.
I still have a hard time not being really angry at that doctor who didn’t listen. I feel like that was a turning point down a bad path and the doctor could have prevented it.
Thank you for sharing. I can only imagine what you went through and what you are feeling now, as you seem to have been dealing with it longer.
Especially before a kid is 18 or before when they decide they don’t want parent’s help any more, we absolutely feel it’s on us to not give up and give her every advantage. Her inability to open up which limits the help she gets, we feel is not intentional but just yet another symptom of the problems she needs help with. She and we are yet to unjam that door to recovery. The good thing is she does want help and willingly goes to providers.
We are looking at residential care too. Deciphering, evaluating them is ten times harder. We are talking to one in WI, among others. Big commitment, minimum one month. They said could go up to 3 months. Basic rate is thousand a day. Insurance will pay, but not sure if it’s 100%.
Me again. I have no doubt that you, like us, will give it your all well after your child enters adulthood. It just gets harder and different. And there are challenges you just don’t imagine. Like when your child is not competent to give the hospital permission to talk to you and you have no idea where they are so you’re panicking for days on end while you are trying to manage life - like your other kids and your job. And even after our kid stopped wanting/accepting help, we still work hard every day to help but have to find different ways.
I don’t mean to rain on your parade about RTC and insurance. But here’s the reality. Your carrier will tell you the limits of your coverage not actually what they will pay. And the program will tell you the ideals not how long they can actually get the carrier to cover. The carrier will do utilization review and cut the benefits as soon as they possibly can. They have criteria that you don’t know about that is used in this evaluation. Then you will have to decide if you can and/or will pay to keep them there. Because the cost of a lawyer to sue is more than the cost of care itself.
I think it’s important to know this so you don’t get lulled into believing that your child will get everything she needs before they discharge her. It’s important because you will either need to be ready to write checks or ready for your step down services. And, having walked this path for awhile you know it’s hard to find services. So don’t think you are on break and that you have three months.
We got five weeks and I have unlimited coverage for RTC. Second time we got three - same coverage. My friend who has decent coverage and got the same message from the facility (guessing it’s the same one) also got five weeks. Lots of people I know got less. I know one person who got more but was still left hanging and it was a day by day review making it really tough to plan.
Also know that when you send them Away (and you have no choice because we lack those resources in the DMV), discharge planning falls on you because the program doesn’t have contacts or know the resources in our area.
If you’re looking at Wisconsin, I’m guessing Rogers. I hear good things about them and I know many people whose kids went there. They did not accept my child because they thought mine was too difficult. I appreciated the honesty but I would have sent them if it had been an option.
Again good luck to you. I will be thinking about you and hoping you find the resources that can turn things around.
Thank you. For sharing and the tips and the cautions. I am sorry to hear that you've been at this for so long. I will keep you in my thoughts as well.
The RTC is in fact Rogers. My wife found them through extensive research and asking around.
I sense the financial risk. Rogers is in network so in theory insurance should cover 100% of the days they approve. But Rogers did tell us about "other" providers that may get used that may not be in network. And as you said, if we have to pay for extra days ourselves, we can afford full services for only so many days.
Anonymous wrote:
We ended up sending our kid to residential treatment - twice. It really did help. But like i said in an earlier post, it’s an ongoing struggle. Periodically suicidal and still gets hospitalized periodically - in fact just finished a month long inpatient, two parts of which were involuntary, and as you know it has to be really bad for insurance to pay for a month. Still medicated and not really a functional adult. But still alive.
I still have a hard time not being really angry at that doctor who didn’t listen. I feel like that was a turning point down a bad path and the doctor could have prevented it.
Thank you for sharing. I can only imagine what you went through and what you are feeling now, as you seem to have been dealing with it longer.
Especially before a kid is 18 or before when they decide they don’t want parent’s help any more, we absolutely feel it’s on us to not give up and give her every advantage. Her inability to open up which limits the help she gets, we feel is not intentional but just yet another symptom of the problems she needs help with. She and we are yet to unjam that door to recovery. The good thing is she does want help and willingly goes to providers.
We are looking at residential care too. Deciphering, evaluating them is ten times harder. We are talking to one in WI, among others. Big commitment, minimum one month. They said could go up to 3 months. Basic rate is thousand a day. Insurance will pay, but not sure if it’s 100%.
Anonymous wrote:I would post in the special needs forum to ask about which intensive outpatient programs/partial hospitalization programs they have experience with and how to navigate insurance for them. In addition to asking about therapists with success with teens with SI. It sounds like you found a NP that might work.
Because it sounds like your daughter has other diagnoses, you might also want to ask in the SN forum what helped teens with X and Y and SI. Or if you're not sure if a diagnosis is acurate, you can ask for input.
The SN forum includes a lot of mental health issues, and it might help you feel a little less alone in this struggle.
Thank you. Will try the other forum.
Anonymous wrote:
I completely understand where you are. I’m also there except mine is now an adult and there is very little place for parents in that equation. But that’s another story.
What I’ve found is benefits on both sides. One of the worst doctors was very experienced and highly recommended by many. But he had opinions from his years of practice and didn’t listen to any of us - not that my kid was talking much back then. And he didn’t take into consideration what did and did t work in the past. The result was awful - and expensive. We spent every penny we had on life saving treatment after that disaster.
OTOH, newer providers can be more in tune with the latest and greatest of treatments and i haven’t experienced that know it all attitude.
In the end it’s all a crapshoot and depends a lot on how available your kid is for help and how much help you can afford to pay for. But it does feel good to us when we think we’re doing something like researching providers. Like we’re not so helpless and we can make a difference.
I’m sorry you’re going through this and I wish your family well.
I hear you and thanks for commiserating. Do you mind sharing about the life saving treatment you mentioned? In DM would work. Was there somebody you could use as an overall guide to figure out best course of action?
Daughter’s providers for a year we spent a lot of loaned money on pretty much threw up their hands and ditched her.
A major challenge for us is what you mentioned- lack of openness and communication. It’s like she’s trapped in this hole and nobody is able to pull her out as her hands are not stretched out. It’s chicken and egg problem.
About experience, more is not always better, absolutely agree. However 0 is scary. Somewhere around 5 I would trust that they are bringing more than textbook knowledge.
Psych care is subjective and murky to a large degree. We have seen it first hand with so many providers. You can not just sub one for another and expect good results. Especially for a complex and risky case such as my daughter’s. When you fear their survival.
About experienced provider…We ditched our daughters first pediatrician after the first visit. Published author, on best doc list, 3+ decades experience. He mocked my questions and kept examining DD in a pool of pee. Couldn’t bother to clean her up first.
Anonymous wrote:Anonymous wrote:You sound super difficult to me. I think you should show this thread to your therapist. There's a lot for her to work with here.
You sound super defensive to me. Like you’re an unqualified provider.
-DP
DP, you brought a smile to my face. Ty.
Anonymous wrote:
I get your frustration with locating providers and finding a good fit. I also understand what it’s like to have a suicidal child - coming up to the sixth anniversary of the first attempt and there is no end in sight. The pain and the fear are intense. And the pain in the a** that it is to find providers is real.
But your focus on having 5 years of experience seems misplaced. Fit, accessibility, success with your kid are what matters and that can happen with someone in their first year or their 45th year.
I kind of see your point. I am in fact more worried about the quality and fit of the future therapist, more than that of future psychiatrist. However, we would only know for sure a psych MD or NP is a good fit, after using them for a while. Before starting with somebody, there is rudimentary vetting we want to do. It can not be the very next random provider we can get. In that vetting, experience is of course big on the list.
I might make more sense to you, if you knew the full story. After years of struggle, our kid is not stable and could be having SI any time. We really don't want to take any chances and want somebody with reasonable experience to help on the medication front.
We feel like we may not have a third chance to keep her safe, so everything counts. If she was just now starting to have some issues, I would be less worried, but the sense I and my wife have is that we may be running out of time to keep her safe, as we navigate and stumble around this crazy world of mental health.
Anonymous wrote:Anonymous wrote:You sound super difficult to me. I think you should show this thread to your therapist. There's a lot for her to work with here.
Not op.
SUPER ! You sound dumb.
Op I’ve noticed the same thing when looking for help for my teen. Places were evasive about their staff’s experience. I definitely was more interested after one practice offered someone who was attending Liberty and unlicensed but they said would have some supervision. Nope.
I am not surprised that you had that experience.
Providers of all kinds in training have always been around. They could work fine for you. Or not. What I am seeing in psych is a bit different There is a severe shortage and lots of money to be made. Earlier medical providers have rushed in. Long term, patients will benefit as most of them will mature and be effective providers. In the interim, you are on your own to figure out who you can trust. For patients who are not stable and at severe risk, it's a nightmare.
Anonymous wrote:Dr. Selassie in Bethesda or Chevy Chase takes insurance, not sure about new patients.
Also, because it sounds like standard antidepressants aren't working, is there any reason to suspect type II bipolar, which is where the manic phases aren't dramatic?
Thank you for the tip. Will look into it.
What is the right diagnosis? That is a loaded question. Kid just went through a neuropsych eval. Got bunch of diagnoses, none new. The psychologist wasn't too sure which are the root causes that triggered or worsened other diagnoses. Clear as mud. Kid was not impressed with the level of due diligence by the doctor. She is super smart and she was right. She wrote a long email to the doc. The doc essentially said insurance pays for only so much due diligence!!
During my search, there was another psychologist I liked with good reputation and a comprehensive approach for neuropsych eval. Couldn't afford her. She doesn't take insurance. I tried to figure out how much the insurance would cover the out of network doc. It was a struggle for a month. Repeated answer from the insurance - they will assess after I file a claim. Is there another world than mental health care that is more bizzarro?
Anonymous wrote:
...
Hi OP, I'm sorry my comment sounded flippant. I just meant that given the shortage of experienced mental health providers, you probably won't be able to find someone who has the experience your daughter deserves and takes insurance, unfortunately. It sounds like that's kind of where you ended up at.
I will say that we didn't find Children's helpful because their psychiatrists are a rotation of psychiatric fellows learning to be psychiatrists.
I'm so sorry your family is going through this.
Thanks for understanding. My post was directed towards unhelpful, dismissive and accusatory posts from others. Sorry I put that in reply to you.
We've had one in-patient experience with Children's. They appeared fine, but they were of course focused on short term recovery. You have to deal with providers-in-training at any teaching hospital.
Given what is at stake, the very life of our child, we want to get her the best providers of the right kind, soonest possible. It's just sooooooooo hard to even figure out for sure what kind of provider that would be (e.g. what kind of therapy, after one year of DBT), then to identify the really good ones in that area, then worry about affordability and availability.
Physical illnesses tend to be black and white with definitive tests and exams, so mediocre providers might just work out. With mental health, the quality, suitability of the provider and your child's rapport with them makes all the difference. With rapid influx of newly minted psych providers, especially NPs and therapists of all kinds, it's a scary world out there.
We took out loan for intensive one year long, out patient therapy. Just after they said kid was good to reduce the schedule, is when she attempted. After that, they don't want to touch her at all. She was practically kicked out. We have nobody to guide us, like a primary care provider. Now weighing out patient vs residential care. Figuring out residential care is a whole another story.
Thanks for being kind.
Anonymous wrote:OP, I think your frustration is justified. The reality is, there is a shortage of child psych providers, and the need surged after the pandemic. So people are stepping in to fill these roles without years of experience. If your child is already on a stable medication regimen, and you just need refills or slight tweaks in dosage, I wouldnt obsess over provider experience level. The psychiatrists I've dealt with personally have usually just prescribed whatever I asked for.
I hear you. The problem is the kid is not stable. We fear losing her. See my next reply.
Please ignore this reply.