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.

http://www.actassociation.org/actModel/

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.

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.