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Insane Consequences - Book: Anybody read this?


#21

@Rinda - maybe you can see what folks in the mental health community in your area think of the idea? Right now getting educated feedback about flaws in the idea are critical. If that sounds good to you, we should connect offline and I can explain the details and share the paper with you.


#22

Hi Monica. I watched the ROCA video to understand what “relentless outreach” looks like. I like this idea because it adds an extra layer of effort, a layer of effort that the DMH or other agencies don’t offer with their Peer Advocate programs. Am I right?

From what I’ve experienced with my own son is that peer advocates will only show up at my doorstep if my son initiates their support. But of course he doesn’t do this because A) he’s paranoid, and B) he thinks his life is just fine (he sits around all day doing nothing, due to his negative symptom of no motivation).

But what you’re trying to assemble, or create a model for, is something the family could access, without the “approval” of their ill child?

If so, I would love to have someone relentlessly reach out to my son. He desperately needs this. At this point, he has nothing to help him improve the quality of his life, aside from medication and a small group of close family members.


#23

Are you in MA? You mentioned the DMH :slight_smile:

One of my objectives is to get more $$ in the system as well as more PACT programs generally, so while I have shared this with someone at the DMH, I’m not thinking they (or Medicaid) would fund it. I have no idea who is the best type of person to be the relentless outreach worker - that’s one of many things I would hope folks in the field would have a better concept of. It might be a Peer Advocate. Maybe you have some ideas?

I do know that it has to be person-centered and much longer term than we typically see. Roca reports they spend on AVERAGE six months contacting someone before they engage with that program. And that’s without barriers like paranoid thinking. I’m really trying to get at the problem where the system says “So and so said “no” and they have every right to do that” and then do nothing until that person gets arrested. The revolving door wasn’t great before that, but after arrest things get really bad. I want to prevent that (and the trajectory to homelessness).

I’ve been told I’m tilting at windmills - but sometimes you have to - I really hope to get some new conversations started about this problem. Sorry I can’t magically make this exist today for your son ;-{ But yes, it would be something where family members could do the referral.


#24

I would definitely be willing to do this and would love to discuss in more detail off line . If I can figure it out on here how to send you my private contact info I will. At the moment I’m at work and will look into this more this evening. Thanks so much


#25

Yes I’m in MA. The DMH isn’t nationwide? Silly me haha…

That issue of “so and so saying they’re not interested, and that’s their right” is one of so many challenges we caregivers are up against. Those of us who deal with anosognosia in our loved ones understand this. The people or organizations who try to manage our cases?..maybe not so much.

I think a project like this would be money extremely well-spent. How could anyone with a real understanding of our plight argue?

I think tapping into a program that already has an established peer advocacy component might speed things along. The funding is another issue though, especially if grants are not sustainable.


#26

I love your idea. I think a PACT with outreach is appropriate for people with SMI who are not working or in school or otherwise employed with volunteer work or in training for work. If someone is functioning in society in any measurable way, they can say no and it’s their right, but if they are living without income, job, school, a sustainable living situation, etc, then keep approaching them as they are “at risk” for hospitalization, incarceration, homelessness, or worse.

I completely agree that medication should be optional for people in PACT programs because people should be able to engage in whatever treatment they feel might be helpful to them.

In order to make progress, people have to think of lots of ideas and propose them to the powers that be. The system is so broken; why not try to find a way to actually help people with SMI?


#27

You got the idea exactly about who it’s for. Thank you for your comments!


#28

Monica, it sounds as if your concept project and PACT are akin to something we have in New York State, ONTrack NY, part of a nationwide initiative. www.ontrackny.org It’s a small team that essentially partners with the patient, in the home rather than a clinical setting, to help educate, achieve goals, and so forth. That’s all I know so far. It was recommended by the chief psychiatrist during my son’s most recent admission, since he has anosognisia and is noncompliant with any prescribed after care–ongoing Rx, psych visits, etc. The OnTrack clinician has reviewed my son’s paperwork and is coming on Mon. to interview him, the first step toward acceptance into the program. My ex and I are going to try to gently tell him tomorrow, a day before the interview, and hope and pray that his resistance will not sabotage our only hope. Going forward, he will decompensate again within a few weeks if this fails. In any event, I will be glad to keep you updated if this in any way dovetails with what you are working on and if it can be of any help.


#29

I believe On Track NY is a First Episode Psychosis (FEP) program that is based on the Navigate program that came out of the RAISE study by NIMH. As you say, it’s very related to PACT, except I’m pretty sure it’s limited to folks in the first 74 weeks of illness and the program is specifically 2 years in length.

PACT has been around (sometimes called ACT) since sometime in the 1970’s. I think the first research version of it was 1972. There is a ton of research about why it works - including all the things you list above. The primary difference (I think) between PACT & Navigate is PACT takes folks who are older and have been sicker longer and doesn’t necessarily have a length of time. Also Navigate does a great job of focusing on things that are particular to younger folks - like the combination of psychosis with mood swings that are typical of that age group and some of the other challenges around young(er) brains combined with psychotic features.

Good luck with your son, if he gets into OnTrack, I have only heard good things. As you say, it does require his being willing to go…

My concept idea is actually around working with folks who are resistant long enough that they are ready to give PACT or OnTrack a try… but I do figure it will be a few years before someone pilots it…