Busy week

Couldn’t decide what to title this, but I felt that with everything that went on last week, I needed to write about at least some of it.  I attended the local and regional CSP meetings, along with a housing meeting, all this while recovering from a badly bruised elbow, which is doing much better at this point for those who know who I am, my hand and arm are feeling almost “normal”.  I got hit with some sort of bug over the weekend, so I’m a little under the weather as I write this I am keeping my box of kleenex within arm’s reach at all times and sleeping when I feel the need to.  today is better then yesterday though, so that’s getting better as well… I was actually awake most of the day unlike Saturday and Sunday where I slept most of the day and didn’t move unless I had to because moving caused me to cough a lung up.  At any rate, it seems it’s been one thing after another, and I’m hoping that the upswing I started today continues, especially since I need to go do some C/FST related work on Wednesday this week.

So, back to the meetings I attended last week ….

Local CSP ….
 Those present at the meeting were again encouraged to attend the Service Area Planning  (SAP) meeting coming up on Friday the 15th from 1:00 to 3:00 in the Warren State Hospital gymnasium.  most of the people at the local CSP meeting were Consumers, but there were a handfull of Professionals as well.  The person leading the meeting put me on the spot and asked me to explain a little about what a C/FST does and what my purpose is.  Since I’m very new to the idea myself, and was far from prepared to speak, I floundered a lot, but I think I got the basic concept out stating that my job is to find out what Consumers and Family members think about the services they receive and any obstacles that might be preventing them from fully accessing services.  I went a little more in depth then that, but that’s the nutshell description.  After my little fumbling explenation, the table was then shifted to a survey of a different kind.  The person running the meeting, had a survey that she needed input from Consumers so she did a group survey by presenting the various questions to the group.  Questions covered topics such as needed supports (i.e. safe housing, transportation to appointments, lack of MA providers for physical health, more funding for ICM’s to ease the caseload, daily living skills, assistance transitioning from the state hospital to the community…etc.).  I don’t recall specifics of what was discussed, but I know the frustration of not having local Medical Doctors who accept the access card was a huge issue that was brought up and discussed at length, because it also has an effect on the transdportation issue, or maybe it would be better to say the two go hand in hand since if we had local doctors who accepted MA, transportation wouldn’t be as big of an issue.

Housing Meeting ….
We discussed target groups and possible ideas on how to assist them in Warren County.  We also discussed ideas for alternative type housing, such as fairwether lodges or other evidence based housing options, but we decided we need to find out if there are other evidence based housing options beyond fairweather lodges, so yours truely got asked to dig around online to see what I can find … so far most of what I have found is links to sites based in the UK so progress is slow not to mention I was sleeping most of saturday and sunday, so I didn’t accomplish much on either of those days, but need to buckle down and get back on track here I can’t stop the world because I can’t breathe through my nose and my head feels like it’s going to explode if I squeaze it too hard, so plug on I must.  I’m going to eventually add a page relating to housing as I get a better feel for what I’m doing with this group since I learn best by researching and then creating some sort of reference point for myself, but I like to share what I learn, so that’s why you get to have all my links available to you 🙂

Western Region CSP (WRCSP) …..
Let’s see … how to sum this one up, I always learn so much when I go to this that it’s tough to decide where to start.  I guess I’ll start with the workgroup I sat in on, which was the Anti-stigma workgroup.  We discussed experiences had by some when going to the emergency room or medical doctor for a clearly medical problem.  Some had positive experiences with nothing to say indicating they had ever ran into trouble, but many of us in the group shared the frustration of being told we were “faking it”, “Pill seeking”, “attention seeking” or any of a number of issues where the provider assumed that since we were Consumers, we weren’t there for a legitimate medical reason and therefore wasting the doctor’s time.  One person described a situation where she was told to go home becaus the doctor didn’t believe she was in any pain … it turned out she had kidney stones.  Another person described a situation where she had dental work and was having a bad reaction to medication that was ordered as part of the treatment for her dental work, only to end up with the ER counting the pills, and disposing of them and then ordering something that didn’t help at all.  In either case the people who described the situations felt that had they not carried the label of Consumer or mentally ill, they probably would have been taken more seriously and not treated with such disregard.  We discussed the possibility of creating a brochure that could be given to hospitals raising awareness about mental illness both for the treatment of patients who enter the hospital, and also for those working in hospitals explaining what having a mental illness and working means to a Consumer and how to reduce the stigma surrounding having a mental illness.  The group decided that for many, being arrested and ending up in jail offered bragging rights, while having a mental illness and not being in trouble with the law meant shame, isolation, stigma and stereotypes placed on us by society and the media.  Our first project is to work on a brochure to educate law enforcement about mental illness and ask for more dignified treatment of mental health consumers by law enforcement (i.e. when transporting a non-violant Consumer do they really need to be humilliated by being handcuffed as though they were a criminal when going from a local hospital to a state hospital for example?).  Needless to say we live in an imperfect world, but it seems that those in the anti-stigma workgroup want to try and improve the world they live in, I know I do, and maybe today it’s brochures … tomorrow, maybe it will be going and talking to different places to further educate them about Mental Illness and the stigmas faced by those with a diagnosis.

NAMISWPA gave an update on Housebill 1448 which seems to be stuck in appropriations, we need to encourage our representatives to vote yes to this bill, but first we need to get it up for consideration on the house floor.  Dan Frankel initiated the bill with the support of quite a few other representatives, and HB1448 if passed into law will create a non-lapsing trustfun from any money gained by the state from the sale or lease of property currently used by state run MH/MR facilities.  This trust fund would be used to help fund Community mental Health services to ensure that community mental health systems aren’t strained by an influx of Consumers from State facilities allowing the communities to have proper supports in place for these folks at the time of their discharge, instead of waiting until the person is discharged and then throwing our hands up as we try and figure out how to fund the services they need in order to integrate into the community.  HB1448 is a timely bill, with the closuree of Mayview on the horizon, and the possibility of other state MH/MR facilities closing in the future.

OMHSAS reported that there are actually 2 Service Area Planning Meetings on February 15th.  Warren State’s SAP is from 1 to 3 and I think it was Mayview that is the same day from 1 to 3:30 Please, if I got this wrong, let me know, because I can’t remember which state hospital had their SAP scheduled the same day as Warren I’m thinking it was either Mayview or Torrance, but I’m not positive  Those 2 stand out in my mind for some reason though.

Well, I think if I make this any longer people will quit reading if they haven’t already, so I’m going to end here, but I have another post inline already so I’m going to do a shorter more traditional post for it.

Fluke? or the beginning of a new trend

  I witnessed something that impressed me more then you can imagine.  our local Community Support Program (CSP) has been floundering at best for as long as I can remember with meetings in the past discussing what activities should be held for Consumers at the drop-in center, and other misc. topics that really didn’t pertain to what CSP is about.

  What I saw and was part of this past week was an awesome sight for me to see, our local CSP was discussing issues that could have a potential impact on our community as a whole, and the Consumers especially.  among the topics, there was discussion about the upcoming Service Area Planning Meeting, and Consumers were encouraged to come and voice concerns either themselves, or to give their concerns to a spokesperson who would voice them for them, whether Consumers choose to speak or not while they are there was optional, and everyone was encouraged to at the very least show up so that folks at the state level could see there was interest and concern about the future of Warren State Hospital. 

  Another topic we touched on included the petition I’ve been circulating for HB 1448 which is sponsored and first presented by Representative Dan Frankel, and if passed into law would create a non-lapsing trust fund that would be used for Community mental Health Services. The money for the fund would come from any money gained from the sale or lease of land currently used by state MH-MR facilities.  NAMI Southwestern Pennsylvania has a PDF file of a downloadable petition that can be printed and then sent to the person listed on the bottom of the second page of the petition. their site is located at …. http://www.namiswpa.org/ 

Also discussed was the letter writing campaign being championed by Rachel Freund of PMHCA, here’s an excerpt from the WRCSP December 2007 minutes where I first learned about this.

“PMHCA continues to work with our partners on the campaign to raise the monthly $60 personal spending allowance for people in personal care homes. Already nearly 400 letters have been sent to the Secretary of Welfare and her deputy secretaries, as well as PA Senators and House Members. We can help you host a letter writing event at your center – join your voices with our efforts so we can help the 8800 people struggling to live on $60 per month!  For more information on any of these points contact Rachel Freund at 412-621-4706 or rfreund@verizon.net

The WRCSP minutes were found at this address …. http://www.pmhca.org/?page=csp&region=western

  So what does this all mean?  It means that for the first time in my experience with the local CSP in my county, we had a VERY productive meeting that talked about real issues that could effect not only us as individuals, but also our community that we live in.  Was this a fluke?  I don’t know, but what I do know is that I’m hoping that future meetings are as productive and stimulating as this one was.  I saw people who normally don’t get involved in discussions, asking questions and offering their views instead of sitting their being told what to think they were forming their own opinions and ideas about things.  The person running the meeting was encouraging Consumers to speak up and be heard, which is something that I’ve heard other counties doing, but until now, never really saw it in action in my own, with the exception of rare individuals who tried to encourage Consumers and for whatever reason were squelched in the past.  If what I saw this past week continues, it could mean a new day in Warren County, but I find myself asking, ‘Is the county ready to hear what we have to say? or is it just false hopes?” Time will tell, but I hope it continues because I saw more life in that CSP meeting then I had seen in other local CSP meetings I had attended and life is a wonderful thing to see developing and growing.

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