Just getting in from going to the luxury IPIC theatre to see the movie “The Butler” with Alfonse.  Wow, what a movie.  What a tear jerker!  I’m emotionally drained from this film!  I highly recommend it.

It was nice to get out and do something fun with John.  We love that theatre because they have these “first class” comfortable reclining seats with a pillow and blanket and a great screen/sound system.  Tuesdays are “member night” so we saved $8 a seat and it’s less crowded.

It was bittersweet for me remembering the first time we went there several months ago or maybe even a year ago, when John was well and upbeat/animated exclaiming over and over how special and wonderful this place is.  Bitter because his mental status is so different now and sweet because it reminded me how high functioning he can be.


I really don’t think he can get back to this level with this team.  And that’s ok.  They are used to dealing with the “discards” of the mental illness world.  People who’ve been abandoned by everyone else, who are so bad off that they’ve fallen in to this “ACT Team”. And for that reason, in my opinion, they are allowed to be lazy or apathetic or unmotivated without checks and balances.

Then they run in to me, likely their worst nightmare.

In thinking about this program, and observing them in the brief time I have, it seems they receive their funds via the funding provided for people like my brother.  But, what it appears, is they spend most of their time in meetings, in “staffings” , in documenting what they need to document in order to keep those funds coming in, to keep their jobs in their small cubicles.  But what it doesn’t seem they focus on is actually interacting with the people there they are mandated to serve.

I was warned about this by our attorney.  He broke it all down for me. That these programs, these workers are kind of at the end of the line.  And that’s what you get from them.  I get it.  It doesn’t excuse it but it’s clearly what is happening.  But don’t call yourself an “intensive monitoring program” and not even offer the bare minimum of “monitoring”.  I don’t like false advertising in anything, especially when it comes to the basic health and safety of my brother.

I googled ACT Team and this is what I found:  their model.

PRINCIPLES OF ACT Assertive Community Treatment services adhere to certain essential standards and the following basic principles:

  • PRIMARY PROVIDER OF SERVICES: The multidisciplinary make-up of each team (psychiatrist, nurses, social workers, rehabilitation, etc.) and the small client to staff ratio, helps the team provide most services with minimal referrals to other mental health programs or providers. The ACT team members share offices and their roles are interchangeable when providing services to ensure that services are not disrupted due to staff absence or turnover.
  • SERVICES ARE PROVIDED OUT OF OFFICE: Services are provided within community settings, such as a person’s own home and neighborhood, local restaurants, parks and nearby stores.
  • HIGHLY INDIVIDUALIZED SERVICES: Treatment plans, developed with the client, are based on individual strengths and needs, hopes and desires. The plans are modified as needed through an ongoing assessment and goal setting process.
  • ASSERTIVE APPROACH: ACT team members are pro-active with clients, assisting them to participate in and continue treatment, live independently, and recover from disability.
  • LONG-TERM SERVICES: ACT services are intended to be long-term due to the severe impairments often associated with serious and persistent mental illness. The process of recovery often takes many years.
  • EMPHASIS ON VOCATIONAL EXPECTATIONS: The team encourages all clients to participate in community employment and provides many vocational rehabilitation services directly.
  • SUBSTANCE ABUSE SERVICES: The team coordinates and provides substance abuse services.
  • PSYCHOEDUCATIONAL SERVICES: Staff work with clients and their family members to become collaborative partners in the treatment process. Clients are taught about mental illness and the skills needed to better manage their illnesses and their lives.
  • FAMILY SUPPORT AND EDUCATION: With the active involvement of the client, ACT staff work to include the client’s natural support systems (family, significant others) in treatment, educating them and including them as part of the ACT services. It is often necessary to help improve family relationships in order to reduce conflicts and increase client autonomy.
  • COMMUNITY INTEGRATION: ACT staff help clients become less socially isolated and more integrated into the community by encouraging participation in community activities and membership in organizations of their choice.
  • ATTENTION TO HEALTH CARE NEEDS: The ACT team provides health education, access, and coordination of health care services.                                                                                                

This would be funny if it wasn’t so tragic.

This is the one that just kills me:

HIGHLY INDIVIDUALIZED SERVICES: Treatment plans, developed with the client, are based on individual strengths and needs, hopes and desires. The plans are modified as needed through an ongoing assessment and goal setting process.

John has not been “assessed” by anyone in the program and there has been no plan to assess him that I can ascertain.  I can’t believe that at some point this morning I was told the sum total of what he will receive from the program are 5 min visits to watch him put his pills in his mouth and swallow. That’s it.  Anything else, he needs to “ask for” or some other smokescreened excuse for offering a sum total of zero “highly individualized services”.  Highly individualized indeed.  He was shoved like a cattle in a line in to taking his sedating bedtime meds at 5pm.  Shaking my damn head.  Frauds.

Let me just go back to the meeting this morning.  We met first with the Dr.  She asked John to describe how he’s been doing.  It would take a cursory look at him to realize he’s not doing well, that he is obviously very depressed (mornings are worst). She assessed the correct things, asking him if he was having hallucinations (yes), thoughts of harming himself (no), thoughts of harming others (no), feelings of depression (yes), etc.  She’s not horrible.  My gut tells me she’s new to this job and relies heavily on the bitchy controlling Care Coordinator for the management of this program.  Fine.

She made med changes which is really her function in the team.  Good.

She then turned to me and I outlined what happened with the Risperdone.  I watched her kind of glaze over, basically only concerned that John had gotten this med but not what it took for him to get it.  I was glad I’d documented it all and requested it be “red flagged” in his file.  I pulled out my letter in the envelope and told her I’d documented everything, that I was very concerned about the lack of care John has received in his first week with the ACT Team as well as things that, in my opinion, jeapordized his basic safety.

She then suggested bringing the Care Coordinator in.  Fine.  She walked in already with a defensive attitude as there was a little meeting outside the office before she entered. She was probably forewarned that I was “difficult” or “disgruntled”.  As I expected, she was defensive and turning things back on us such as “what are you not getting that you are expecting”.  I’m pretty sure I said something like “anything past a 5 minute med check per day, a meeting with a case manager, a plan, something”.  At some point I was told that the med check was all John would be receiving with this program like this was adequate monitoring and I was expecting too much.  Really?  WTF?

I then kept asking “why if you have all these case managers out there specializing in voc rehab, recreation, home management, etc” has John not been assessed or contacted by anyone?  How will he receive these services?  What needs to happen because he’s sitting around all day alone unless I’m pushing him to attend classes. Ohyeah, she used that as an indicator he was well managed, that he had attended classes.  They have no way of monitoring that, have not helped him create a schedule, encouraged him to go, nothing.  I reminded them both that they only reason he was doing anything with these classes was because I was spending time with him daily and creating a plan for his day.  She said “well then where is the problem?”.  “It’s not my job” I replied.  “So you think that’s OUR job?” she defensively barked back.  “Yes, it is” I said.

power struggle

Finally after this back and forth power struggle, she relented that his case manager should assess his needs (this teenage looking Justin Bieber lookalike with a backwards baseball cap who’s only question to John was “do you like to play video games?” with a laugh, clearly wishing John did, so his home visits could be entertaining for HIM).  I asked when this assessment was planning to take place as John had not been contacted by him or anyone.  She explained that Justin Bieber’s twin needs to “assess” John and if he determines John has any of these needs, then he brings it to the team, they staff it and decide if John needs these services then and only then is he assigned a case manager who, I guess, at some point will contact him.  Oh and she told me “Justin” has been on vacation since last week so that’s why he hasn’t contacted John.  I just kept saying “John has been in this program for a week, low functioning, and receiving no case management after two weeks of no services at all after he got out of the hospital”.   I guess when someone goes on vacation, everyone they are managing is just put on hold until they get back, including the Dr. herself.

Both this woman and the Dr. looked at me like I was speaking an ancient unintelligible language as I kept asking these questions.  Finally, she relented that “Justin” would be contacting John this week, seeing him every other week at his home ( sorry no video games) and the other weeks “in the community” resulting in one visit per week.  I won’t hold my breath that this will actually take place but I sure will monitor it.  Finally I got something clearly and distinctly promised to us.  If this doesn’t happen, I can hold them accountable to something specifically promised.  Sigh….having to monitor a “team” supposedly created to intensely monitor their unstable participants is exhausting and scary.  Bottom line:  I don’t trust them and don’t think I ever will.  Why would I?  Why would anyone?

As she walked out I told her that even the med checks have been inconsistent and that John waited all Sat. evening and no one showed up. She shrugged and said “ohyeah I know who that was, I’ll talk to them”.  So the one and only service John was to receive is “optional” it seems.  Again, shaking my damn head.

The Dr. however seems ok.  She made a change in John’s meds, made sure he was set up with the meds he needs and made sure he has an appointment with her next week.  Ms. Bitchy seemed shocked the Dr. wanted to see him back so soon and shot her a look of surprise but the Dr. insisted she wanted to see him that soon.  Good.  Usually the Dr. just sees them once per month.  I’m sure Bitchy was annoyed that John was being given “preferential treatment”.  I reminded them both we gave up the one person who WAS monitoring John weekly for this program for him to get no one monitoring him other than making sure he puts pills in his mouth (pills they don’t even check that they are the correct ones by the way, just the pills John, himself has placed in his med box), which by the way, HE doesn’t NEED.  “Individualized Care” , right.

By the way, Dr. Yasinski, who’s not even treating John right now, emailed me last night inquiring how he was doing.  How many signs do I need about who cares about John and who doesn’t?


I really wonder what would have happened had I not shown up.  More of the same I suspect.

I did get his “med checks” changed to the morning after Ms. Bitchy reminded me repeatedly that the 5pm time is all they can offer.  “Then it needs to be changed to mornings” and the Dr. did so.  I get this feeling she would retaliate against John for the trouble I caused if not held accountable.  That’s terrifying and why I included this as the last paragraph of my letter:

I trust my voicing my concerns in no way will affect my brother’s ability to receive services from the ACT Team or Choices Enclave. I’ve also sent a copy to the medical director of Choices Network so that everyone is in the loop regarding the concerns addressed in this letter.

“Choices Network” is the entire organization and it’s a Psychiatrist, a female who runs it so I sent the letter to her.  I’m sure by now I’ve been labeled as a “red flag” myself but do I look like I give a shit?

I feel certain once I return from my vacation, we will be putting together a new team and ditching this marginally functioning pathetic program.  I just need to know that John’s basic needs are met elsewhere (meds, weekly blood draws, etc) before I yank him.  I asked him how he felt about everything as we drove home from the movie and he said “I just think they are getting away with the bare minimum”.  BOOM.

I reassured him he deserves the best.  And that I won’t give up on him, Dad won’t give up on him and we will do everything we can to get him the best care we can.  I only hope this sinks in on some deep level to feed his soul in some way.  The voices are already creeping up saying “no one cares about you, no one likes you”. Now how has the neglectful actions of this program not reinforced that?  It’s disgusting.

I’m glad I went to the appointment and glad I hand carried my letter and glad I held their feet to the fire.  It remains to be seen what they come up with once I’m gone.  Right now I’m just hoping he doesn’t land back in the hospital and if he needs hospitalization that anyone will even notice that.   I will have John document for me the visits he gets though as not only do I see a team change in his near future but a formal complaint issued right after that to the Behavioral Health Board for the State.  One thing I can do is persuasively write.  Oh and the other thing they don’t realize is that I’ve got the most influential mental health lawyer in the State on my side and we see him on Thursday.

I don’t expect to effect a change in the way this apathetic program functions but who knows?  Maybe my attorney will direct me to help effect change on a more global, political level in our State which would be a good place for me to put my energy.  Think of all the patients without an advocate that are being “monitored” by these ineffective nitwits.  It’s heartbreaking really.

Thank you all for all the support/suggestions/letter rewrites and everything else over this issue.  It was ALL helpful to me.  I took all of the ideas and formed them in to one semi bullet pointed letter. 😉

And more than anything I’m glad I got John out of the house for some fun tonite.  Even though he’s not at his full functioning mode, we did have a good time and at one point I got so emotional during this movie, I reached out to his hand on the hand rest and squeezed it.  He squeezed so hard back it hurt but I didn’t let go for a long time.


I just hope John can feel my hand even when I’m across the country for 10 days.

17 thoughts on “accountability

  1. pilcherje

    ““what are you not getting that you are expecting”
    THAT, coming from the mouth of the Care Coordinator. I’m appalled. That phrase right there would’ve been enough for me to ask her to leave, in no uncertain terms. That you saw her outside the Dr.’s door to begin with was clue enough…she was going to handle you and she knows the issue with the Risperidone is a legal issue. She was heading you off at the pass. I don’t know how you kept your “cool.”

    She said “well then where is the problem?”.
    I can’t control myself enough to say what I really want to … best left unsaid. Other than, in a parting letter from their services, her name is used profusely, like a swear word.

    “It’s not my job” I replied. “So you think that’s OUR job?”
    Here I’m ‘thinking’ of an expletive. What she said, how she said everything to you, isn’t professional and isn’t representative of her employers principles. And I know you know that. Apparently it is a standard without distinction as it’s in “word” only. Failure to act is a problem. Can you imagine what their SOAP looks like? You, essentially, have been coordinating that for John. While they all “share office space” and duties, “Justin’s” coordination of care is on hold until he returns.

    “PRINCIPLES OF ACT Assertive Community Treatment services adhere to certain essential standards and the following basic principles:”
    “adhere to certain essential standards” … FAIL … the same for “following basic principles.” And that’s their opening offer? Just my opinion, when there are more questions than there are answers, it’s time to leave.

    I have questions for you Kathy, obviously a doctor is on-call 24 hrs, correct? In the event of an episode with a client, is their recommendation to call 911? What is the facilities roll in coordination, if any, during that period? Or, is coordination resumed post release, from a possible Baker Act or other hospitalization? The reason I ask is because of this: “These four SAMHSA evidence-based practice models will be incorporated into our future Maricopa County RBHA contract… and formal monitoring of fidelity will begin in 2014.” ACT is one of the programs out of four.

    If this covers John’s location, what will be AZ DHS requisites and protocols to that incorporation ? I’m sure your lawyer will know…but this made me think of my encounter with RCW Codes here, (yours may be some form of Statute) The hospital functioned 24 hrs…what hospital doesn’t, however, the director of the laboratory claimed being on vacation and unable to respond in time to the states request on an issue that would be heard by a judge.

    My contention was that the lab functioned 24 hrs in concert with the hospital needs for patients. I won my case of course, but had no idea there was an RCW Code that signified (paraphrasing) once a letter (from the state) is placed in the mail it is “Considered Delivered” by the state. That the lab functioned 24 hrs whether the director was there or not only bolstered my case. Legal issues Do Not Cease until a director returns from vacation.

    I chuckled to myself that the judges name was the same as mine. But I also had proof the director had returned in time for the hearing as I asked one of the nurses to get a copy of the note from the post board showing her return. Chuckles again. She lied to the judge anyway…because as an added bonus for me, I’d made a call to the court stating (originally) I didn’t know if I wanted to go through with this…the lady was very nice. We talked, I told her about the copy of the notice I had, showing the director had returned before the hearing. She then informed me she was the judge that was to hear the case and shouldn’t be talking to me, but suggested I continue with the case. I’m wondering what Statutes or Codes ACT operates under. You would make an excellent advocate! xoxo

    • Wow pilcherje, I don’t know the details of your case but it sounds exhausting staying on top of these details…and familiar. I feel like Juan Martinez digging in to the details and getting hit with obfuscation like Jodi Arias on the stand…ha!
      One little detail I forgot to blog. As kind of a “consolation prize” yesterday , the Coordinator asked John out of the blue if he would like a taxi arranged to get him to the clinic. He’s never expressed transportation issues, in fact just yesterday in the appt. said “I have my own car, I don’t need that” then that’s the one and only thing she offers…a taxi. I think because he’s passive and polite, he just said “ok”. So he ended up going in a cab yesterday, getting there an hour early and having to wait to get back home. They are sending a cab today to get him there too (I suspect this little smokescreen will disappear tomorrow) but they pick him up right when the “med check” is to be done. Ya think anyone is noticing that? That he won’t be there for the med check at THEIR scheduling?
      Of course he’s worried he will get in trouble for that. It’s never ending. Yes it’s clear we need to yank him from this incompetency but the timing sucks. I need to find a way to trust he will be ok over these 10 days I’m gone, then roll up my sleeves when I get back. I KNOW there is a good team for him…we just need to get him in to it.
      Thanks for this informative post…keep em coming!

  2. spellbound4

    People in need of mental health care could definitely use an advocate like you, one who is able to express ideas and concerns so well! What an exciting thought you have hit upon. It frustrates me that physical health and mental health are completely separate —– mental health care is either so stigmatized or given less validation and the patient suffers even more.

    What a fabulous night out for you and John! That theater sounds like a special place!

  3. {{{HUG}}} Advocating for a loved one is one of the hardest, most frustrating and devastating jobs on the planet. My 5 year old son Drew is autistic, so I have different issues to navigate, but I can totally relate to the utter heartbreak, frustration, rage and hopelessness that cycle in and out of your life when God has entrusted a different & special soul to you in this life.

    I was so terrified that my children would be autistic! What a life-lesson: I prayed daily that my kids would all be “normal” and then I gave birth to Drew. 🙂 He was a fussy baby with eczema and he wanted to be constantly in motion in his Baby Papasan. He used it so often that my engineer husband fixed it to plug into the wall instead of run on batteries that wore out. He also clawed at his face and we had to always “double-sock” his little hands to keep the bleeding and gore to a minimum. He also had to breastfeed LITERALLY every 20-15 minutes. It was exhausting!

    Drew is in a program at school for 1st Graders now. He still does not speak. Sometimes I lay awake at night praying that I live long enough to ensure that Drew has a good adult life. There are so many “cures” out there, but the hardest thing I’ve ever done in my life is finally accept that my son is different and there’s nothing I can do as his mother to “make him normal.” What a bitter pill!

    I also have the additional stress of PTSD from my abusive childhood & witnessing my father brutalize my baby brother who had ADHD & dyslexia. It breaks my heart to think that my brother was helpless and had no control over the behavior issues he was beaten for. When I look at Drew, I’m also trying to heal my brother (if that makes sense).

    Dealing with the mental health professional community is depressing! Especially when you encounter that institutionalized syndrome that burnt-out workers fall into. They cease to see an individual human being in front of them & they just try to skim by doing the absolute minimum to get you out of their office.

    You wrote that you had inherited a disabled child–that’s so true! It is such a profoundly sacred duty to have. Just know that you’re not alone in this journey. And please keep being that “worst nightmare” in advocating for your dear brother!!!!


    • It does help Lara to know I’m not alone..I’m sorry about your son too…it’s one thing to manage them, another altogether to manage the care providers. I do know now after all the feedback here combined with my “gut” that I need to ditch this program and put together a kick ass team when I get back. And that I can do. I look forward to it..and I will put up my parting shot letter along with a complain to the Board here for all to read. That’s mainly because of the ATTITUDE I’ve been subjected to. Yes I am a Scorpio…mess with my family, you will get stung. Nice seeing you darling.

  4. Kiminnm

    So glad you went!! Prayers that the meds will continue to work..I remember you saying that he took a downturn when he started antibiotics? I have been reading a lot on that connection. Does he take a probiotic? Just a are probably up on all that ..just a thought! Glad you both had a nice evening out! Hugs! Kiminnm

    • omg Kim…I’ve been so overwhelmed with other things, it hadn’t even occurred to me that he’s on an antibiotic NOW for the UTI he may or may not have. And he’s hearing voices again…like clockwork. Dear Lord…thank you for reminding me of this.

  5. Will seriously think of you every time I even think about feeling overwhelmed. You are so amazing Kath and I know a pat on the back is not really what you need and certainly not what you are looking for but I don’t have much else to offer. Will be praying – that is the best thing I can offer. Keep up with the deep breaths, enjoy your trip and know you are loved! Hope to get to see you at courses or something soon!

  6. spellbound4

    I am at a loss for words to express my emotions brought on by all these comments. Might I just say that you are ALL such amazing people! I truly enjoy this blog and the ease with which we are sharing and caring.

    KCL, please have a wonderful time away and come back revitalized to take on your next challenge.

    Special blessings for all of you here.

  7. Kiminnm

    Yep, I just wish there was a family friend that could stop by and ck on Alfonse while you’re gone..where are the dang caretakers when ya need em? ;). Ha, if I lived closer I sure would…
    I am learning to nurture more friends who are caretakers like me…I used to attract the users and abusers but I am is so hard for me to be on the receiving end but I have had to…on occasion. Well, hope you can get Alphonse on some probiotics before he gets worse..darn antibiotics…can’t live with em or without them!! Blessings, KCL !

    • I do have Steve…but he’s caretaking his own psychiatric patient in California right now! The irony of that is not lost on that…or serendipity, or something. But yes I can relate and me too!

  8. Oh Kathy, what you’re going with this team is WRONG on every level. Wrong, wrong, wrong. You and John deserve so much better. I don’t even know what to say. I can only imagine how worried you are. To leave for 10 days knowing how poorly this group is is doing is scary to say the least. I am just overwhelmed for you. Wrong, wrong, wrong!!!!!!!!!

    At a loss – can only imagine how you feel.

    God Bless You and John,
    Prayers are being sent Heavenward.
    Love and Healing Hugs,
    Paula ♥ ♥ ♥ ♥ ♥

  9. Chris

    OMG…How disappointing just plain wrong and actually scary.Think about the patients that have no family or friends watching over them. Miss “Care Coordinator” is obviously in the wrong profession.I’m shocked that she had the audacity to speak to you in that manner, what a jerk.
    She probably kicks the dog when she gets home from work. Well look at it this way..The next place has to be an improvement and hopefully you and John can get back on the right track.Try not to worry about the ten days…worry won’t change the situation and John just may surprise you when you return.
    Best Wishes….

  10. lovelaw

    Short and sweet. Wait…not sweet. THIS JUST PISSES ME OFF! Why, why, why are these people in the business of “caring” for people?? I shudder to imagine what care patients who do not have a “katie” in their corner are receiving.

    I hope John can feel your hand, too, Katie. I think he will. ❤

  11. Kat

    I am so glad you have such a heightened awareness and knowledge of your brother’s journey. Unfortunately in our current muddled up medical system highly informed and caring Advocates such as yourself are needed. You are awesome!!!

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