Transcript of “Rights Here, Rights Now – Episode 13: “PAIMI”

Produced by the disAbility Law Center of Virginia.                                                            

[INTRO]: The information provided on this podcast does not, and is not intended to, constitute legal advice. Instead, all information, content and materials available are for general informational purposes only.

Welcome to Rights Here, Rights Now, the podcast about disability, advocacy, and activism. I’m your advocate host, Ren Faszewski

And I’m your advocate host, Virginia Pharis. Every two weeks, we dig into relevant issues, current events, and avenues for self-advocacy.

‘Cause someone has to!

It might as well be us!

[REN]: This podcast is produced by the Disability Law Center of Virginia. The Commonwealth’s protection and advocacy agency for disability rights. Find out more at www.dlcv.org.

[VIRGINIA]: So today we’re going to be talking to our PAIMI council chair, Tina Stelling. And she’s going to tell us all about what the PAIMI council is-

[REN]: What’s this PAIMI council business anyway, Virginia?!?

[VIRGINIA]: That- that is a very good point! So, PAIMI stands for: Protection and Advocacy for Individuals with Mental Illness. It is a federal act that comes with the grant. It is one of the main funding sources for DLCV. And, as part of that program, as part of that-PAIMI- all of the protection and advocacy agencies…have to have a PAIMI council. So there are, um, people with lived experiences that are providing recommendations, um, providing advisement to DLCV on what we should be doing.

[REN]: Yeah, it’s a super cool, kind of feature that we’re able to have, you know. Folks in the community that are actually living with mental illness, or who are affected by mental illness giving their perspective. And we’ll dive even more into that. But, before we do that, let’s check out disability in the news.

**NEWS SEGMENT**

“We know that unfortunately many people/individuals are facing discrimination during this pandemic. The justice department recently put out a statement that those with disabilities need to be on guard during this time. If you believe you’ve been discriminated against, you should file a complaint against the justice department, or contact the Civil Rights division director. Complaints regarding employment can be directed to the Equal Employment Opportunity Commission. The local office should be contacted about any violent acts or threats. We sincerely hope that you do not face any acts of discrimination, now or ever. But, we wanted you to know how to file a report, about any amount of discrimination that you have faced. As always, you are welcome to call us if you’ve been discriminated against.”

**END OF NEWS SEGMENT **

[REN]: All right! We are here with our guest. Ms. Tina Stelling- thank you so much for joining us today! [Smile.]

**Enter, Tina Stelling-**

[TINA]: Thank you so much for having me.

[REN]: Tell us- what is this PAIMI council, anyway?

[TINA]: Okay. So, PAIMI stands for Protection and Advocacy of Individuals with Mental Illness. And what it is it’s an advisory council to the Disability Law Center of Virginia.

[REN]: Okay, that’s…fancy. [LOL.]

[VIRGINIA]: So—so, what does that council do. And how does that fit into the work of dLCV?

[TINA]: Oh yeah, of course. So, the PAIMI council advises DLCV on any of its annual goals and objectives that would fall under the council’s mission statement. So, that is to say: any of the goals and objectives that are centered around consumers of mental health services- that they’re free from abuse, neglect, and really, any other rights violations. And, this is in institutional AND community settings [*both*] across the state of Virginia. And, how it fits into the DLCV…Um, well I would say that the council fills an essential role, really, in ensuring that the DLCV stays on track, and continues striving. To ensure what is really the most vulnerable among us. That they are not disenfranchised. And what all of us I think know to be a deeply flawed system.

[REN]: So, you mentioned that this is really about, you know, consumers, people who are affected by mental health conditions, really talking about the issues that are important to them. And I know you mentioned abuse and neglect, is there any sort of like, particular things in the past, that you guys have like, been involved in, or an issue that like, was really dear to your heart, or anything like that?

[TINA]: Well, you know, I think that the goal is that you have a bunch of different objectives, right? So, the goal that people with disabilities are free from abuse and neglect in institutional settings. And, we divide these goals up amongst our members. And then, we go over them annually. Right? In depth. And so, we definitely have people who are maybe more passionate about, and focused on…jails. Right? And some people who may be more interested in focusing on state physiatric facilities. As far as typical issues that come up that are near and dear to my heart, that are anything related to the information that we’re getting in the litigation. The report that we’re getting from the executive director at our meeting is, uh, really powerful, because you’re seeing these…the benefits of checks and balances being put between the PAIMI Council and the Disability Law Center. It’s actually having real time benefits on it’s- on actual people who aren’t just numbers in a report. If that makes any sense. And uh, it’s a really awesome thing to be a part of.

[Pause.]

[REN]: No, no, that’s- that’s excellent. Yeah, I’ve- I think that… it’s important…as advocates. You know, obviously we- we know these issues. But not always as an individual experiencing the situation. So it’s really good to have that viewpoint-

[VIRGINIA]: I work at DLCV, and I identify as somebody with lived experience, but even for me it’s so helpful to have the PAIMI council! And even, you know, for the people that work at DLCV, you know, to help get these “blinders” they have on. You know, this, this is—these are the preconceived notions, of how the system works. And having people come in and be able to say, you know, that may be your perception, but we have a different experience. Let us tell you what that is.

[Pause.]

[TINA]: Absolutely.

[REN]: How often do you all meet. And, what do those meetings entail?

[TINA]: So we do meet quarterly. The crux of this is that we do require a detailed review of those goals and objectives that I was talking to you about. And, the dLCV does provide us with a detailed account on all of these. Their progress and then the executive director will de-brief us all on any relevant litigation efforts that the dLCV is doing at that time.

[VIRGINIA]: So, you guys are a council, councils are made up of members, and councils very rarely have full membership of anybody that they meet. Especially right now, I mean, I think, that it’s um, you know, super hard for some people to get accorum. Are we…recruiting for the PAIMI council right now? And if so, like… what kinds of members are needed?

[TINA]: Yeah! So, we are definitely actively recruiting right now. The council is required at any given time, to have anywhere between twelve and fifteen members. And, we do have a number of requirements that we are required to meet. So, most specifically right now we’re looking for an attorney. We’re also looking for a parent of a child who’s a consumer of mental health services. I am…one of the things that I really appreciate about the council is that we are continuously conscious of our consumer ratio, so, what that means is that the majority of the members are required to have been previous consumers or current consumers of mental health services. Sorry, we also try to have a voice represented from every region. So, right now, we are encouraging people from the southwest & from northwestern Virginia & the tidewater region to apply.

[REN]: Yeah. I think that that’s a really good point. And again, I think that in these sorts of advocacy groups, and, we’re not the only ones. When you have these groups where, you know, you ask people from the community, you know I think it’s really easy to, yeah…you know, like you said…to not meet those consumer ratios. Where you have councils that are supposed to inform. You know, where you have issues that affect them. And they tend to all be parents. Or relatives of somebody who knows what the disability is. But, not actually a person who has that disability. And the region thing’s really important. I know a lot of us are based in central Virginia, and it tends to be (laughs) really heavy central Virginia participation. So, yeah, looking outside of that is really important.

[TINA]: Yeah, absolutely. I think that sometimes people are a little discouraged by the different and the distance. But something that’s worth mentioning to listeners who may be concerned is that dLCV does reimburse for gas as meetings do generally take place in Richmond.

[REN]: And who doesn’t love a good gas reimbursement?!? [LOL.]

[TINA]: Absolutely.

[VIRGINIA]: How do you feel like your life has been enriched by the work? Like, what do you…what do you get out of being on the council?

[TINA]: So there’s really two answers to that, right. One is the big picture answer that is separate outside of myself. And the other one is the “me, Tina,” and how it’s had an impact on my overall self, right. So, as far as big picture, like I was saying about the litigation report briefing. I think it’s really awesome to see, in real time, people who are having their lives beneficially impacted by this system. And I just…I’m so proud to be a part of that. But, as an individual, if I can make it about me for just a second (laughs) because I think it’s important to know. Just how much of an impact this can have on people’s lives, right?

I have not been doing this work for very long. I came on the scene about (5) years ago for mental health advocacy. And, I am disabled as a consequence of a serious mental illness. And this disease came into my life like a wrecking ball and I lost pretty much everything virtually overnight. And I had to find pretty much a new sense of purpose in life. I lost two careers and I was very lost and I was still living in what I call the proverbial mental health closet.

I was very ashamed of my diagnosis. And now I’m out and it’s not something that defines me but it is a tool that I’m able to use and it’s a well of empathy from which I can pull doing the work that I’m doing in positions like the PAIMI council. And it’s just…I can’t express enough how fulfilling that is.

[REN]: Well, thank you so much for telling your story. I think that that’s really important to hear. From people themselves, rather than, just hearing people talk about other people’s stories. And hearing it from the people who are actually experiencing it. So, thank you so much for sharing that.

[TINA]: You’re welcome.

[REN]: If somebody were interested in getting involved, how do they apply to be part of the PAIMI council?

[TINA]: So, they can visit the dLCV’s website. And then they have a tab that says “About Us,” and then the PAIMI council is an option under that. And the application can be found there. And if they have any issues with that, or if they have any questions, they can ask to speak with Nicole Durose and she’s very happy to mail out an application if they so require it.

[VIRGINIA]: All right, Tina, well thank you so much for taking the time to talk with us about the PAIMI council and how you guys are basically the backbone of dLCV. We appreciate you so much.

[TINA]: Thank you!

[NARRATORR]: And now, for a DLCV highlight. [music.]

Based upon a dLCV Investigation, a large developmental disabilities day program, completed over staff training on several issues. First, staff are trained to assume that any fall can result in a serious injury, second staff are trained to immediately obtain evidence, including obtaining the contact information for witnesses outside of the program. Third, staff were trained to observe evidence FOLLOWING the incidence, fourth- staff are always trained to follow behavioral support programs, and fifth- staff are trained so that they follow specific dietary restrictions. Such training will ensure a safe environment.

[music]

[REN]: Well, once again we want to thank Tina for joining us today. It was absolutely delightful to have her here on the show!

[VIRGINIA]: Absolutely! And remember, if any of you out there have any interest in finding out more about the PAIMI council, and possibly joining the PAIMI council, check out our website at dLCV.org.

[REN]: And thank you all for listening to this episode of Rights Here, Rights Now, brought to you by the Disability Law Center of Virginia. We are available on Apple Podcasts, Spotify basically where ever you get your podcasts. Don’t forget to subscribe and leave us a review.

[VIRGINIA]: If you need assistance or more information about DLCV and what we do, visit us online at dLCV.org.

[REN]: You can also follow us on Twitter, at @disabilitylawVa, and share us with your friends.

[VIRGINIA]: Until next time, I’m Virginia Pharis!

[REN]: And I’m Ren Faszewski. And this has been- Rights here!

[VIRGINIA]: Rights Now!

*** End of Transcription ***