Producer:
This podcast is sponsored by Assisted Living Locators, NYC.
Amanda Rodriguez:
The Power of Social Work Podcast is advocating for the social work population in New York and also for individuals affected by mental illness. We're here sitting with the National Alliance of Mental Illness or NAMI New York State to talk about destigmatizing and advocating for communities affected by mental illness. And I'm Amanda Rodriguez, a policy or leader here at the chapter.
Gideon Mosse:
I'm Gideon Mosse. I'm the other policy coordinator here at the National Association of Social Workers.
James Norton:
James Norton, government community affairs manager for NAMI, New York State.
Amanda Rodriguez:
Thank you so much, James, for being with us here today. It is so important to stand in coalition in the mental health space because we are stronger together, especially in New York. And so for those who are listening for the first time that may not have heard of NAMI New York State, give a little rundown of who you serve, what populations you interspaced with, and a little bit of history about your organization.
James Norton:
So NAMI, New York State was founded by two mothers who felt that there weren't enough services for their sons who had schizophrenia. They found the organization to represent individuals with lived experience and their families trying to advocate for better conditions, but also to provide support mutual aid. I often say that when I first was hired to work for NAMI, I kind of thought it was like the ACLU where you send in your membership dues and then they send you a little note in the mail that says all the great things they did with it. But you're not a lawyer, you're not joining their legal team. But NAMI at the national level obviously does a ton of advocacy work. They do a lot of research. They do a lot of community organizing, but when you join NAMI, you join the state office too, and you join your local affiliate.
And the local affiliates offer everything from family to family to peer to peer, NAMI connections. There's also a host of specialized peer support groups that are NAMI Homefront for veterans and their families. There's per ER for ER staff, Overwatch for law enforcement, first due for EMS and fire. Whole host of different mutual aid programs that are all volunteer run. Most NAMIs actually don't have staff in New York State. A couple do and some of the larger cities are New York City one obviously being the biggest, but really it's driven by the members and it's really at the grassroots level mutual aid based.
Amanda Rodriguez:
NAMI is in so many important spaces and our membership as well, we are membership driven at NESW New York. We try to say no decision about you without you. And so it's so important to bring the peer support specialists in, bring individuals affected by mental illness into this advocacy work because their stories can move mountains. And so we really do uplift a lot of vulnerable populations that interface with social workers every day. So we appreciate you being here and sharing with our members, but also with your members
James Norton:
As well. It's great to be able to share with your members and help them see it from the family perspective, the individual perspective. Also throw in a quick bug for naming provider, which is a program we do where a person with lived experience, a family member and a mental health provider get trained to do this program and offers a course to teach to anyone who's in social work, mental health counseling, psychiatry, psychology. Our goal is to kind of improve that connection between the providers and the individuals as well as our government officials and the individuals. You already brought it up, but discussing
Gideon Mosse:
Grassroot organizing in general. I feel like NAMI and NASW share a lot in common when it comes to grassroot organizing, but there are obviously struggles that occur when you're doing this grassroot organizing that you're trying to do. We're really trying to push bills. We're really trying to help social workers broadly in New York. So from your experience, how do you think you best are able to approach that subject, best approach the challenges that come from grassroots organizing in general?
James Norton:
When I first started it, the big challenge was kind of understanding what the membership wanted. We started with a lot of surveys trying to get a good idea and it's been a challenge. We probably have the largest legislative priorities list currently at the Capitol and that can be a problem when you have too wide a priority list. But so many things affect mental health, you find yourself in every room.
Gideon Mosse:
Absolutely. I mean, that spoke to me too. We have so many bills that we obviously work on and we open it fast. There's so much surrounding social work in general that we are working on. It's hard to really narrow in sometimes on all those bills, but we're still doing our best obviously and getting stuff done. That's the whole point of all of this. Make it easier for social workers for us to exist in New York, I'd say.
Amanda Rodriguez:
Yeah. And we appreciate a lot of the priorities we have in common that have to do with workforce. We know that we're in a workforce crisis in the state as well as the nation when it comes to funneling more social workers and other mental health providers into the space. I did want to touch on the stigma and how it affects our work. So as we're advocating for the workforce and for mental health populations, how does public stigma often create an obstacle as you're trying to get legislation passed, but also as you're advocating to the legislature, to the governor, but also just to get people to join the movement as well. How does public stigma become an obstacle?
James Norton:
It really becomes an obstacle to sharing the realities of the situation. There's people who don't really want to share or they don't want to share parts of their story or in some cases they are a family member, they want to share with their family members and somebody who wants to share their story. It's really important that the voice is driven by individuals with lived experience, but it can be hard to really center that when the stigma is telling them to be quiet.
And I often share that. I worked in public safety, EMS, fire for those fields specifically, it can be a really repressive force in that people fear for their jobs or if you're for their careers, their livelihoods, their health insurance access, their families' lives, but that is not an isolated thing. There's a number of people who think like, "Well, I work in public policy or I work in as a lawyer or whatever else." There seems to be a ... Even now that we're breaking the stigma, there's a really like, "Oh, it's okay to talk about your mental health." And then you hear someone like your surgeon talk about their mental health and you're like, "Wait a minute." Everyone means everyone. And so that's the message of trying to get all people to share their mental health stories and talk about all of their mental health, making sure everybody feels comfortable to do that.
Amanda Rodriguez:
Because we talk a lot about trust in the system, but also distrust in the system. So there's a plethora of resources out there for people, but you have to create a safe space for people to want to access those resources. So the work that we do to constantly de- stigmatize accessing mental health resources first comes with education and awareness. So we know that at NASW, we do a lot on the education front when it comes to hosting our cares, community engagement programs and our CEU training for social workers to help equip them on their needs to serve their clients. What is something that NAMI New York State is doing to educate the public that will help reduce stigma in that way?
James Norton:
So every year we do an education conference. Next one's going to be this November. We try to do them every November and bring dealer a lot of voices there. We also do a lot of community-based presentations that we have a program that pairs high school students to go into high schools or we do NAMI walks to build awareness. But our big one is coming up. I'm here in April, but next month is May Mental Health Awareness Month. Timing was planned. We've been doing this every year and every year NAMI's done ribbons all throughout their communities. So NAMI volunteers will tie this kind of ribbon that is supposed to help bring out or highlight that mental health affects every community. So if every community puts up these ribbons, hopefully that helps drive that. That's so
Amanda Rodriguez:
True because everybody understands the need for physical health services because if you break your arm, everybody understands that you need to go to the doctor or the emergency room and get surgery. However, mental health, it's something that's invisible sometimes and people sometimes don't understand that health and mental health is so correlated in the way that your health affects your mental health, but also the need for mental health services could possibly lead to a physical health problem that eventually could occur. So when people talk about overall health and public health, it's a little bit less stigmatized and the fact that everybody understands that those services are so necessary. However, when we consistently combat that narrative that health and mental health goes side by side, then you can begin to bring mental health into the spaces that are only being discussed around physical health.
James Norton:
Yeah. I mean, we can talk a lot about holistic care, but part of that, again, holistic person is their mental health.
Gideon Mosse:
That's absolutely something in general that NAMI and NASW definitely coincide with, I'd say, just because obviously with social work, the biggest goal for social workers is getting people to actually speak about their mental health issues, the problems that they're facing. And that is why social work exists a lot of the time at least. I can only imagine how setting it can be if you're a clinical social worker and you're hoping to help a person that's not able to really tell you how they're feeling. Yeah, that must be so wildly challenging. And so I mean, that's obviously why work collaborate.
Amanda Rodriguez:
Yeah. And we talked about public stigma and people's perception of mental health services, but also the services social workers and others provide. But let's talk a little bit about institutional stigma. So when we're looking at systems that are meant to provide these services to individuals, what are some structural flaws in our system in New York, but also in the nation that can lead to individuals not getting the adequate services that they need or from preventing them from even going to the system in the first place?
James Norton:
So I'll just clarify what we have a ton of bills, we break them up into five policy categories. One is equitable access to mental health supports, one is supporting behavioral health workforce, one is crisis assisted outpatient treatment, involuntary commitment. The fourth is criminal justice reform. For those with mental health issues that go untreated long enough, it often falls to that category and then one for youth and family supports. So when we talk about the institutional barriers, it's a lot of access. Is there a person who needs mental health services? Can they find a therapist who speaks Taglog? But also does their health insurance cover it like they should? And mental health therapy has been obviously a big one for NAMI for a while. It is definitely something for you all. Yes. Yeah. We have one bill this year around clawbacks, which is something called a retrospective denial in insurance speak.
Amanda Rodriguez:
I know that the private practice social worker's going to love this one. So definitely want to hear about that one.
James Norton:
Yeah. I mean, it's one that a lot of patients don't really know about. Once we explain it to them, they're surprised that it's even allowed. But you request the service, go to your doctor, they go to your insurance. The insurance approves it with prior authorization. The provider provides the care, the person gets the care, they go home. Sometimes months or years later, the provider's told that actually that care wasn't necessary and we're going to withhold payment on current bills to recoup ourselves, retrospect, deny, or call back the funding that we have said, "Oh, actually you don't need that now." So again, it's one of those things where we can say, "Oh, well, we have mental health parity," but somebody can retroactively go back and say, "Actually, your arm wasn't broke." No, that's obviously one area and there's a couple of bills on our list around improving mental health parity and improving the coverage rates for reimbursements, making sure that kind of equity and pay, but also the equity reimbursement. I think we hear a lot about low pay for all the provider groups, but we can't just say, "Oh, we'll pay them more." And then the providers are like, "Well, you're not paying me more. How do I do that?"
James Norton:
So part and parcel of fixing the workforce part is improving the reimbursement part and that starts more at the policy and the systemic level.
Gideon Mosse:
Yeah, absolutely. And I think in general, it's sad, but so often you see these mental health issues along with social work coming down to money a lot of the time, at least in New York State. One thing that we're seeing, this is actually a national issue as well, but we are really pushing for social workers to get higher pay all around, which would obviously help people enter the career. So many people don't want to enter the career in general just because there's not high enough pay. They'll go down a nursing route, et cetera. And we really hope that we are able to uplift the career and the pay for the career hopefully so that we can inevitably, I guess, get more social workers that can help with this mental illness crisis that's going on right now, which is evident.
Amanda Rodriguez:
Yeah, because one of the things that we've been looking at with the wages is that the mental health space can be so segregated in terms of where providers are doing the work. There are so many social workers that work for the state and that pay, it can be pretty standard. It's through the Office of Mental Health or the Office of Addiction Support and Services. And so that penny, it can be generally regulated because that's through the state. And so they understand how to control that funding. But a lot of social workers, they have private practice, so then they get their funding through insurance and then we move on to the nonprofits where maybe the services they're providing, they don't necessarily have enough funding to pay their social workers. So I think that it's interesting the different levels to which we can look at salaries. One bill we've been looking at lately is with assembly member Bronson to establish a human services wage for.
And then they would essentially analyze the disparities and the wages across the state and try to get some data on the issue because it can be hard to look at each individual sector and determine, okay, well, how much are you making? What's the starting salary here? And then is that competitive with the state? Is that competitive with other mental health providers? So it's definitely a multi-pronged issue, but it's good to look at it first from the insurance perspective and ensure that at least social workers get funding that they are due to get and they don't have to get an insurance clawback based on a small complication
James Norton:
Or just the denials that so many face before we even get to the clawback point And that can be a huge barrier to access.
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Amanda Rodriguez:
So we talked a little bit about salaries and different issues affecting the workforce. Another issue that we support jointly is loan forgiveness and I know that you support loan forgiveness for a number of different professions as well as social workers in the mental health space, but just tell us a little bit about your advocacy journey in accepting that priority and any possible opposition you might hear from the state, but also any positives to that program as well
James Norton:
Yeah, we really don't hear that much opposition to it when we talk about it. I think the only question is just like how much money is there in the budget and then prioritizing which sectors kind of need it most. I think one thing we've talked about is the need for it in rural communities as a way to kind of help draw more attention. The rural communities are facing higher rates of suicide loss. So that's one reason that that kind of ends up towards the front. But obviously we support a number of different student loan forgiveness bills. And like we're saying, it's a low pay but we want to increase the pay. We also want to decrease the debt and we have to approach it from both directions to kind of decrease the barriers, increase the retention.
Amanda Rodriguez:
Exactly. Because our particular bill that we're both supporting is S1113 in the Senate and that's to provide loan forgiveness for social workers, but it looks specifically at rural communities and it actually looks at populations of 250,000 or less that it's trying to incentivize social workers to go to areas like that. Because when I grew up in a small town, we understand that when you're in a small town that comes with less opportunity than when you're in the city or when you're in a bigger population area. And where I grew up, you had to drive over an hour to find the nearest mental health clinic. And of course that leads to population that's within that area to then suffer and also be less likely to access care. And if you have to travel far to go back care, but looking at trying to recruit those social workers to those shortage areas, it can really benefit that population because otherwise those service providers would not be going to live there if it weren't for that incentive to go serve those populations.
And what this bill would do is it essentially would require a social worker to work in that area for at least three years in an underserved area and that would help just bolster the mental health pipeline and care coordination system within that area to help it so that rural communities don't fall through the cracks. Because often we see that where there's higher rates of suicide, higher rates of depression, anxiety, substance use in rural areas. There's also very prominent in the city as well, but when you're isolated like that, it can definitely lead to an increase.
James Norton:
It's also one of the reasons we push for something that is in the budget. It's in the Senate One House, it's in the governor's state, the state and per budget. We're calling it one patient, one license. It's a program that allows OMH and OASIS to form a joint unit and license them jointly. So if you're looking to treat mental health and substance use disorder, right now you have to be licensed by OMH and you have to get licensed by OASIS. And so they would have to kind of form a unit that would license you to do both. And especially for those rural communities where there's already a shortage of social workers, but that social worker is only licensed by OMH and then they tell you to go 20, 30 miles down the road to go to see the social worker who can do substance use That's also a barrier.
So increasing the number of providers just, but also increasing the scope that they can serve that community in.
Amanda Rodriguez:
So many people have co-occurring Disorder. And I come from a criminal justice background, right? We talk about mental health issues and justice involvement. We can talk about IDD involvement. The system silos can affect those rural communities even more because if you're only licensed by one agency, that's the only one population you can serve, but there's all this co-occurring issues that they can't ... There's these institutional barriers that stop them from doing it.
Gideon Mosse:
And I mean also to discuss S789, which is a field that's right now on the floor, it discusses actually finding these rural pockets that we're talking about right now because the other big thing that we're learning we're bumping into at least is that we don't actually know where these social workers are. We are trying our best, I guess, to make a map out of where these social workers preside. We have data from 10 years ago, but 10 years ago is 10 years ago now. We did that in collaboration with SSWA, the School Social Workers Association of America. And the study showed that New York state in general probably has one social worker for 750 students. The goal, the intended goal as NASW and SSWA found was one in 250. And I'd say New York when it comes to mental health is pretty good in comparison to a lot of other states.
So you can only imagine if we're one in 750, I can't imagine what other states you're at. But on top of that, the other thing that they noticed in the data that they found from that study is that the majority of social workers, and pretty obviously, are in New York City. They are for the most part all in New York City. And when it comes to social workers upstate in these rural areas, there are some social workers that bounce from school to school every day. There might be one social worker for schools that they go to every day, which feels ridiculous, obviously. We need to be able to have set social workers for specific schools, let alone have one social worker for 200 students.
Amanda Rodriguez:
Shout out to National for developing that recommended ratio of the one to 2150 students, because we understand that's how to be most effective from the youth perspective as we have social workers at schools. And the school social workers of America, they also are doing some great advocacy to ensure that school social workers are doing vital work, especially with the increase in family separation with youth being addicted to their computers and with youth also talking to AI chatbots and having issues with that. But as we look at the shortages within schools, we have been supporting the Bill S376 to recommend the New York State Department of Education to analyze the student to social worker ratios. And that was shout out to the Thomas Napoli to the New York State comptroller as well who was the one who did an audit that identified the shortage of social workers that actually focused on New York City as well. So the shortage, there's no shortage of a shortage, we're going to say, right? There's not enough social workers in rural areas.
There's not enough social workers in the city. I talked to the New York City Department of Education and one of the supervisors there said that she represents a whole district and that there's only eight social workers within that department in the whole district. And when you look at a whole school district, you understand that's at least thousands of students. And then you have eight social workers responsible for overseeing the needs for resources within that huge population. We understand that that could definitely lead to turnout, lead to social workers potentially leaving the field. And also it leads students to not have access to not only mental health services, but also resources, especially with the increase instability that our youth are facing.
James Norton:
I know we also support that bill, thanks for the plug. It's also on our list. In addition to the study you're highlighting, it just came out this week, the Kennedy Forum put out a mental health parity index and you can go county to county and see what your mental health worker per capita is.
Amanda Rodriguez:
Oh, is that the HRSA, the health resource?
James Norton:
The Kennedy Forum. Oh,
Amanda Rodriguez:
Okay. Yeah.
James Norton:
Yeah. Because
Amanda Rodriguez:
That's what the loan forgiveness looks at as well. It looks at the critical shortage areas in the state. Yeah.
Gideon Mosse:
Absolutely. And I know we briefly just rushed by it, but to take us on another route, when it comes to AI, how is NAMI dealing with this explosion in technology that is happening right now? Obviously will so highly affect the youth mental health in general.
James Norton:
How are you guys approaching something like AI? So I'd say our national organization is taking a huge look at it. They're paying very, very close attention. I think the one thing that they have stated that they're wholeheartedly against is just AI as a therapist. Having AI therapy would be not great for the human to human connection that is a huge a part of therapy, but I think there's potentially room in improving the billing process, especially with the mental health therapy issues we just talked about or AI note taking, but then you have questions with HIPAA. I think it's hard to look at new technology and points and say it's inherently bad. There's potentially room, but it has to be done with intention, not kind of, here's the tool and to the universe, have fun with it.
Amanda Rodriguez:
Yeah. And when we look back at decreasing stigma, youth, they're going to different tools like OpenAI and friend.com to discuss their emotional and social issues instead of a therapist. And so that can almost lead to more of a stigma to why youth shouldn't access services if they have this handheld device that they can go to that tells them to get up in the morning and to brush their teeth, that gives them mental health advice. And so when we look at increasing the need and access for services, it's almost like some of these unethical approaches to AI. Of course, we support ethical approaches, but when we look at specifically the use of AI and therapy, that can almost contribute to this issue we see where people aren't accessing services in the way that they should.
James Norton:
So I'll forward you this after a podcast session, but there's a great report and presentation that Common Sense Media does on this issue and it shows that the algorithms are kind of prone for engagement. Same problem you kind of see with social media and some of the recent court cases, goal is kind of retention of attention, not actually finding these solutions. And so that's one of the problems you have with social media, but it's also one of the problems you might have with AI where the engagement is the metric that they use to kind of gauge how successful a app has been. We were just at the health summit. It's important to pay attention to what our metrics are for health. I think somebody used the example of kidney dialysis. They measured their success by how many dialysis units they open to treat people who have diabetes and then their kidneys started to fail. And so now they've opened up more clinics for those folks when actually the metric should have been how many people didn't go into kidney failure. So access is important, but you also need to make sure the metric is matching up with the best health outcome.
Amanda Rodriguez:
Exactly. Because we've been trying to analyze data on the correlation between the emergency room visits that are happening because of mental health crisis and then looking at the staffing of social workers and hospitals. So when we're looking at different areas that may have less mental health providers, is there a correlation between that data on an increase in expenses when it comes to these emergency room visits when it comes to people experiencing a crisis with mental health?
Amanda Rodriguez:
I mean, absolutely. And that can be just an assumption, right? But do we have that data?
James Norton:
Someone has it. I don't particularly have it. Again, Naomi again kind of more represents individuals and families. So ER data is not something I rarely have access to. We do have some information from our helpline that we kind of use to gauge where the holes in the system are. I always say that mutual aid flourishes were in the holes in the system, but we do know that much like any other health condition, when you leave it alone long enough, it eventually finds its way to the ER. I say that both as somebody who is an advocate for NAMI and mental health now, but also somebody who's an EMT for six years. You leave the health condition alone long enough, it will find its way to the ER.
Amanda Rodriguez:
Exactly. And that's why it's so important to have open conversations about mental health. And also we talked a little bit about media and social media, but the role of media in the stigmatization of mental health definitely plays a big part. And we see a lot of the time youth is actually kind of moving more towards being more open about mental health than previous generation. And so do you see in your work with NAMI, do you see a lot of young people stepping up to advocate for mental illness support?
James Norton:
Well, we absolutely do. We have a NAMI NextGen program. At our national level, there's a national NextGen program and people can open apply. There's actually a member of our staff who was a NAMI NextGen advisor and is currently on NAMI NextGen and they are leading our state NextGen program as the staff member. So we have 11 NAMI NextGen members who all are between the ages of 18 and 25 who volunteer to do more mental health advocacy out in the community. To that end, their NAMI Next Gen Advocacy Day is May 11th and And mark your calendars and the week of May 11th to the 15th, they are putting on an art show, The Capital in the Concourse. So we have youth from all over the state submitting artwork to be featured on our NAMI Mental Health Art Show right in the Capitol.
Amanda Rodriguez:
Yeah. And that's so true that so many different approaches to holistic mental health approaches are helpful because arts-based therapy, music therapy, just getting creative can help people in their mental health space so much. And I know a lot of social workers try to be creative in what they provide to patients, whether that be yoga or wellness seminars or encouraging those different holistic and just different approaches to just traditional therapy.
James Norton:
Yeah. I think they're seeing it just like any other form of health where it's a holistic approach. Like you see a doctor, you see a therapist, but also are you drinking enough water? Are you eating enough? Are you doing things that you enjoy? Those more holistic parts of health.
Amanda Rodriguez:
Yeah. And I think social workers are trained to look at a whole person and environment. They're trained to look at trauma-based interventions, to look at what you've been through, how you've gone to this point. Is poverty affecting your mental health? Is lack of access to healthcare affecting your mental health? I know to bring up the immigrant population and what they're facing right now, maybe you don't have a social security number and maybe that's why you don't have mental healthcare. And so having that parity and creating mental health as a human right and really instilling that sentiment in New York is so important. And so that's why I wanted to pivot a little bit in this conversation too. I know that you're working really hard over at New York State to actually change the New York State Constitution and create an amendment to create more access to mental health.
So tell the social workers a little bit about the work they're doing in that.
James Norton:
Under Article 17, sections three and four, there's a provision that states the state of New York will do things to address public health. And we want to change that to mental health and physical health. And we want to change Article four where the state may do things to address mental health to a shall, which creates an affirmative duty for the state to do things in the interest of mental health. Right now, the state does do a lot for mental health. I'm not going to say that Governor Hochul especially being that she's one of the governors where we actually did get cost of living increase with the target inflationary increases or the billion dollar investment a few years ago. Same with Commissioner Sullivan. To some extent, that's all the stigma breaking and all of the awareness that has happened post- COVID, post-opioid crisis around the effects of mental health.
But the real goal of this is to kind of institutionalize that with New York State and make a point to preserve the progress we've made. We've done a lot to break stigma. There's still obviously a lot of work to do, but creating an affirmative right to mental health and the duty of the state to act in the interest of the mental health of its citizens is something that will last going forward. We talk a lot about the systemic fixes, but this is one that's foundation fix.
Because why do we have to get to the point of a crisis to divert resources to the mental health space?
And again, at this point, it's a may. So what happens when mental health is no longer in a topic or what happens when a new person is elected to office or appointed to a different position and there's nothing saying they can't cut?
Amanda Rodriguez:
We might have social workers tuning in from other states outside of New York right now. So just to provide some context, in 2024, Governor Kathy Hokel put out her state of the state. She put a very big focus on mental health and mental health crisis that we're in. And that is very paired with our workforce crisis that we talked at the beginning of the episode about. But with this mental health crisis, we need to funnel more workers into the space and not just talk about the crisis and what we can do. And so as we're looking at say the state that came out in 2024, that instilled some great programs and instilled the satellite was in schools to have providers helping the youth, but it also led to a change in narrative like you're talking about in the state where it kind of opened up an avenue for different organizations that are advocating for mental health to really begin to have a presence and to be actually listened to because that kind of opens the door for, okay, maybe we can actually get a bill passed around mental health because now this is the entire narrative within the state.
And even in this last state of the state, mental health was a very big part of the governor's proposals. And so that kind of opened the doors for a lot of advocates.
James Norton:
It really did. And again, to put this in context of outside of New York State too, we're seeing changes at the federal administration to try to eliminate SAMHSA. So that's also kind of driving home this point that, well, we have this system, why make it constitutional? Well, we had SAMHSA and that's something that obviously NAMI is advocating to maintain SAMHSA. There's a lot of really good folks there who care deeply about mental health and substance use disorders. And I've worked on several SAMHSA grants over the course of my career. I'm sure there are a number of folks, especially those who are part of the CCBHCs who are very attuned to the status of SAMHSA right now. So at least from the New York perspective, that is part of the reason we're kind of taking up this mantle. The bill for the Construction Amendment change has passed the assembly twice. It just hasn't passed the Senate. It has to pass both houses. Then it has to pass at both houses again the next year and then it goes to a vote to everyone in the state of New York. Again, not to leave the folks outside of New York out of this conversation, but for the folks inside of New York, it is a way to kind of enshrine mental health as, again, a duty of the state of New York and a right that you have to have your mental health taken care of.
Amanda Rodriguez:
Yeah. And that can set a precedent for other states. So if New York is to instill this constitution, then maybe that can inspire other states to do similar things within their constitution.
James Norton:
Hopefully.
Amanda Rodriguez:
Yeah, exactly. And so we're talking about destigmatizing here today. Another topic that we wanted to bring up was your advocacy with Jesse's law. A lot of the time NASW New York has been looking closely at policy that deals with an involuntary commitment because we understand that when an individual is a threat to society or they are labeled as a person that could potentially threaten themselves or others, then we understand the need to potentially direct them to services. However, a concern that many social workers can look at is, is any policy being advanced anti-homeless? When you look at individuals on the street, New York City had a really big narrative around the subway dangers that were happening last year and stations and people experiencing mental health crisises that may lead to more violence. However, we worry about a slippery slope that could occur when it comes to profiling people based on bias.
And are they actually a threat to society and themselves and what is that line?
James Norton:
Yeah, it can be a really hard one to cross and one that from a patient's rights side as social workers and also as individuals advocating from the point of lived experience and family members, it is really important to try to retain as much dignity and as much rights as you can for somebody, but also recognize that they're not a place to be making decisions for themselves. I often will talk again about my EMS experience where you'd have patients who are unconscious or patients with Alzheimer's. You have this idea of implied consent when you start treating them that this is what somebody who were they able to make decisions for themselves would want you act in their best interest as somewhat of a guardian. With some of the laws that your state passed, it was important to try to address it from a more public health perspective.
A lot of the language is around feed yourself, how is yourself close to yourself. In public health, there's the concept of half the battles getting you the medication. The other half is getting you the glass of water to take it with. You can't ignore that this person's mental health affected them so severely that they can't meet basic needs. And so that was one of the things that they wanted to take into account. Involuntary commitment is a really tough one. I think a lot of people view it as a more outsized part of the mental health system. If you look at, say, 988 numbers, 80% of all 988 calls are just phone calls. No one goes out to visit person. From there, 80% don't go to the hospital. They just talk to the person on scene for those occasionally go in and for the majority of the cases where somebody is taken to the hospital, it's voluntarily. So you're dealing with a fraction of a fraction of a fraction of cases. But even in that case, what we're looking to do with just these laws create a system where the individual can say which facility they want to go to as long as it's within 50 miles of the facility or from their location or location they would've been taken to and the facility says yes to receiving them.
That would give that person who, even though they're not a position to say, "I don't need mental health treatment," still give them the ability to decide which facility they go to and retain some autonomy. There's also a number of folks who just avoid the mental health system altogether because they fear that that will happen again and they don't want to go to certain facilities, but they might know a facility who they want to go to. They might've had a good experience at this one, bad experience of this one. This one might be connected to the health network where they already have a psychiatrist and a mental health counselor or a social worker or whoever else that they already work with. The bill is named for a NAMI member who that was exactly the problem. They were only taken to the mental health facility that was on the approved list in their county when in reality they wanted to go to this other facility that was the next county over where they already had this health network set up and it was closer to their family.
So there's a number of reasons why you might choose which hospital you go to regardless of the reason. We still think that somebody in that event might want to be able to make that decision.
Gideon Mosse:
And that autonomous. I feel like we continuously bump into, and even though this is a problem that is a fraction of the case, I'm going to give a quick shout out to Blue Heron, which I just watched in Peterson at the pleasure of speaking at. It goes over one of these cases where there's a child who really needs to be put into healthcare, mental health. He has a lot of mental health issues, needs to be put into one of these facilities. And I think that a huge issue that spurs and is discussed in the movie is that his feeling of not having any autonomy is making him lash out a bit. So giving that extra layer of at least a bit of autonomy I think is so widely important when it comes to these cases.
Amanda Rodriguez:
And on that notion of autonomy, I know this was mentioned by the chair of mental health and the assembly, Joanne Simon, what we were talking a little bit about these psychiatric advanced directive where individuals can kind of ... People know their body, they know what works best for them and they can make recommendations to what they think would be best for their care and have a little bit more autonomy in that space because to give a personal story, I asked for mental health services when I was in a hospital back when I was in college and almost immediately I was prescribed Zoloft and I already knew going into that session, I don't want to get on Zoloft. I've heard recommendations from friends that say that they had negative effects on their body and their mental health actually from taking that prescription. I don't want to discourage any people from accessing health if that's what they're prescribed, but that was just my own personal experience.
I see often that people who know their body and know to speak up about what works best for them can often be not believed or not encouraged to have that advocacy for their own selves within the healthcare system. But just explain a little bit about any interfaces or stories that you have with people experiencing mental illness that may have experienced the same thing, but also what does these psychiatric advanced directive aim to do?
James Norton:
So for anybody looking for more information, you can visit the National Center for Psychiatric Advanced Directives. For the point of expediency, I'll call them a PAD, PAD. When somebody gets an advanced directive, and an advanced directive is any provision of law and it's around any form of health. If you are somebody who is going under anesthesia, for example, you can set advanced directives of what you want to happen. Some people have advanced directives like DNRs, do not resuscitate, where they don't want to have CPR done or have an AED administered. Some people say no extraordinary measures where they don't have intubation happen. But for psychiatric advanced directives specifically, it's a person who, when they're in a good place, can say, "Oh, these are the medications I'm willing to take, or these are the steps you should follow if I enter the bad ones." It could be whatever the issue is, whether it's schizophrenia or bipolar disorder with hypomania.
There's a number of different ways that somebody can kind of set these parameters before they go in. One of the corrections I would offer to New York States is like any other advanced directive, you can rescind it. So if you are in the hospital and you say, "Actually, you know what? I would like CPR," and then immediately flatline, they will still give you CPR. So that's often one of the things that people worry about when they get an advanced directive is like, "What if I change my mind?" And so it goes back to the Jesse's law era of like, is this person in a good place to make the decision to rescind their psychiatric advanced directive? That can often be a hard line to walk, but a psychiatric advanced directive, regardless of that provision is still a great thing to have ready, especially if you are somebody who knows what you want, knows what your body needs, knows your own psychiatric history better than any person who's working in an ER will.
It's a way to kind of set what you want legally in advance of anything that might happen. And it's not saying that, "Oh, well, I plan on having a psychiatric break in a couple months."
I don't think it's planned that. It's not like somebody who's like, "Well, I'm having surgery later, better put an advanced directive in."
James Norton:
But it is something that somebody can set for themselves and it kind of also gives the hospital and the providers a little bit of coverage. If they're like, "Well, what do I do? " Because there's a couple different options. Well, this is what they want and they've put that down to the legal document, so this is something I can follow. This is something that I already know the person wants.
Amanda Rodriguez:
Yeah. And part of decreasing that stigma is not expecting people experiencing crisis to be able to articulate exactly what their needs are in that moment. So when you create something like that, it creates a safety net for people that they may not know when their next mental health crisis may be. People can't predict that. However, you can create that safety net.
James Norton:
And it may never come, but at least it's a peace of mind that you know if it happens, you've got this document that says exactly what we want.
Amanda Rodriguez:
We talked about a lot of different policy decisions that are occurring today in New York, but also issues that affect the whole nation when it comes to mental illness. And what we're trying to leave people with today is first we understand that there needs to be open conversations about mental health and there needs to be constant advocacy not only for yourself as you're dealing with mental health issues, but also for the entire population that is experiencing a mental health crisis. And so I want to leave the listeners today with resources on how to get involved with naming New York State's work. Are there resources that people can tap into and how can they get involved in what you're working with?
James Norton:
So if you go to NAMI.org, N-A-M-I.org, you can join. The individual membership is $40 a year family, like a household membership is 60, but for folks who are low income, there's an open door membership for just $5 a year. All of our services like the family to family, peer-to-peer, those are all free. Anybody can come, you don't have to be a member of NAMI to access those services. If you just go to the NAMI website, find an affiliate, like put in your zip code or the state you live in, you can find the affiliates near you. You go to their website, you'll be able to see when all of their sessions are. And then some of them, I'll do a special shout out to our NAMI NYC folks, they do quite a few of their sessions online. So people can still go to peer-to-peer family and family online and quite a few folks actually go not from the NYC era just because they feel a little more anonymity going online or to an area where they don't go.
But you can get involved there. And again, when you join NAMI, you join your local affiliate, you join the state affiliate, you join the national affiliate. So you can go to our advocacy days. We're already planning one for next year, but I already mentioned our May 11th day. There's a lot of action alerts we put out to mail your legislators. But one thing I often try to highlight with the NSW folks as well as the NAMI folks, really anybody who's interested in government is paying attention to your county government. If you're in New York State and actually majority of other states, they're called home rule states, which means your county actually makes a lot of decisions that your state is more of provides guidance, resource centers, doles out grants, but your county and in New York State, your DSS is the county organization that will handle a lot of those things.
And there's county community services boards that are always looking for volunteers and there's usually regional commissions that are always looking for folks. Again, just if you want to join NAMI, you can go to our website, get connected to us and then those local affiliates and your local state office can help direct you to the best way to work in your community and our national folks will connect you there. Obviously anybody who's listened to this or a lot of people who listen to this are social workers get connected with you all and be able to partner on these bills. I think we've mentioned a couple times that there's some overlap. We advocate for a lot of different areas of mental health and our perspective is for the individuals and families, but a lot of what we want out of the health system doesn't happen unless the folks who are social workers, mental health counselors, psychiatrists, psychologists, if those folks aren't there too.
Amanda Rodriguez:
Yeah. So many social workers say this, but a lot of social workers understand that there are flaws in the system that can lead them to not serving their clients in their best. So when clients and the people serving the clients are able to come together to discuss what those flaws are and how to better the system, then it can really lead to true advocacy and awareness. And talking about localization of advocacy, all advocacy is local. And so true, getting started with your NAMI affiliates in your local area, but also with National Association of Social Workers in New York, we have our divisions. So we actually have a division director in each part of state and also in the five boroughs in New York City. And that's a way to get involved in your local community at the state level when it comes to helping social workers and also the clients that they interface with.
And so if you want to really do this work to destigmatize mental health, join both of our organizations, one of them, we do work together as we've talked about a lot today, but really we cannot do this work alone and I think that is the bottom line. And so this work to destigmatize mental health, it's a big lift. It's a big hill to climb. There are a lot of partners in this work like the Office of Mental Health Oasis, as you mentioned, the governor highlighting that in her state of the state. So we really need to increase that awareness at the New York state level as we serve oftentimes as a model for other states when we look at across the nation in our systems of care that we have, but it's really strong when clients and their service providers can stand together, identify what needs to be better within the system, but also bring forward that space to allow people to come forward to share their own stories because we need to share our work with people that may be scared to get involved in advocacy in the first place because maybe sharing your story is the most intimidating thing in the world.
Maybe you're somebody who's experienced mental illness and you have a real need and love to advocate for that, but maybe you don't want to share your story in a public forum or you can even share your story anonymously to us and we can have that as an op-ed in our current magazine that we've had for a number of years in the city, but de- stigmatizing mental health, it will not happen. So we truly appreciate you being here today.
James Norton:
Yeah. Thank you for having me on.
Gideon Mosse:
Great.
James Norton:
Thank you.
Amanda Rodriguez:
Thank you so much for joining us here today. If you want to get plugged in with NASW New York, go to naswny.socialworkers.org. Thank you so much for listening.