Editor's Note: This story describes mental health crisis, suicide and suicide attempts. If you or someone you know is struggling, help is available. You can text SAVE to 741741 to reach the Crisis Text Line, or dial 988 to reach the Suicide and Crisis Lifeline. For veterans, you can dial Dial 988 and Press 1 or visit veterancrisisline.net. The 988 Suicide and Crisis Lifeline can also be reached by videophone for people who are Deaf or hard of hearing.
Half of all lifetime mental health conditions begin by age 14, and 75% by age 24. Still, in New York, many young people with mental health conditions face barriers to accessing care.
As New York decides on its next budget, BTPM NPR Disability Reporter Emyle Watkins sat down with youth advocate Emma Pratt and her mother, Amanda Marie, to share her own story of navigating the state's system.
Pratt's first suicide attempt happened when she was 12 years old — and kicked off years of being moved through a system that, at times, couldn't fully meet her needs.
"The big thing is that they're set up for short-term stabilization kind of stays. And I spent months at Strong in those units. I would have staff bring me a cup of air just because I wanted some fresh air. I had one room that when I was there for three months, I started whittling a little hole in the window to get fresh air," Pratt shared, describing a months-long stay at a hospital meant for short-term stabilization, while she waited for a residential placement.
"So, it's just really isolating and it's honestly dehumanizing. I didn't know what I deserved to just be locked up on a unit for months at a time. It felt more like a punishment than a, 'here, we're here to help you.'"
She spent months waiting for placement — to either an inpatient or residential setting — or ended up going home to a community that lacked resources to support her.
"There's a menu of services that are, on paper, available to families," Marie shared. "The state has failed to provide adequate funding for agencies to be able to maintain offering these services. So there's not a lot available at all, actually not a lot accessible."
Pratt grew up in a rural town south of Rochester. Rural communities face increased barriers to care. The federal Health Resources and Services Administration reports "61.6% of areas with shortages of mental health professionals are in rural or partially rural areas."
At times, the closest settings that could support Emma meant she was living an hour and a half away from her family.
As New York considers its budget, Pratt hopes the state will put more money into community-based services, which could help young people like her stay at home and receive care in their own communities.
"I think the in-patients and the residential [settings], I think it should be last resort, honestly. And a lot of times it's kind of just a band-aid," Pratt said. "A lot of kids who really could use those community-based services and all of those things, they're kind of just getting thrown in the hospital and that's kind of the solution."
Pratt became a youth peer advocate, and her mother became a family peer advocate, following their experiences navigating the system. They now help other young people and families navigate the system, which they believe needs more support.
"I think if there were more community-based services that can meet them where they're at, I think a lot of times kids wouldn't even end up institutionalized in the first place," Pratt said.
New York's recently passed budget extender means the state will continue to negotiate its final budget passed the deadline.
You can listen to the entire interview on this page, or read the transcript below.
TRANSCRIPT
This is a rush transcript created by a contractor and may be updated over time to be more accurate.
Emyle Watkins:
Thank you both for joining me here to chat today about youth mental health.
Emma, can you start by just talking about who you are as a person, the things you enjoy, your life now?
Emma Pratt:
So yeah, now I spend pretty much all my free time reading or spending time with my boyfriend. I make a priority to spend a lot of time with my siblings and family members. I have a pretty peaceful life now, I'd say. I read, like art a lot. I paint and draw. I grew up playing the flute, so I'm trying to get back into that recently. Yeah, I just try to keep things pretty peaceful and chill now mostly.
Emyle Watkins:
That's great to hear. And you're doing advocacy work with Independent Living of the Genesee Region, right?
Emma Pratt:
Yes. I'm a youth specialist. I work with zero to 24 years old, and I'm also a credentialed youth peer advocate.
Emyle Watkins:
Congrats.
Emma Pratt:
Thank you.
Emyle Watkins:
And can you talk a little bit about what brought you into this work and your lived experience, if you're comfortable?
Emma Pratt:
Yeah. So I had attempted suicide when I was 12. And from then on, I received services. I was in and out of the hospital quite a bit. And really the thing that got me into it was I just remember how alone I felt. You kind of feel like nobody else is dealing with these things and you kind of just feel like an alien a little bit out in the middle of nowhere dealing with things on your own. So now I make it a priority to really stress to people, "You are not alone. These things are not happening because of you. You have power, your voice has power." That's my biggest thing that I like to tell people now because I struggled a lot with using my voice. I always thought nobody listens to you anyways, because that's kind of the experience I had with services.
So yeah, just really stressing that your voice has power and it's your life and you really have the autonomy to really go and get it if it's what you want. So yeah, that's ...
Emyle Watkins:
I love that message. Can I ask, what were some of the hard parts of dealing with, it sounds like depression in a small town and also in an age where you're growing up with social media? Because I know from growing up in a small town right when social media was coming about, you could see everyone else's lives. And then in your small town at the same time, you also saw everyone else's lives and everyone put a certain picture of their lives out there.
Emma Pratt:
Yeah. I kind of just remember thinking just like, "What's wrong with me?" Because a lot of my friends, well, I didn't really have very many friends, but my classmates, they all led pretty seemingly normal lives. I know there's really no normal, but like the sports and the clubs and the friend groups and all of that kind of stuff. And I just remember I always had kind of a little bit of jealousy towards those people and kind of just like, "Why can't things be so easy for me?" So yeah, just a lot of questioning, "What did I do?" kinds of things.
Emyle Watkins:
Do you mind me asking, leading up to your attempt, did you feel like there was support there? Did you feel like there was someone you could go to at school or did you think that counseling or anything would be available to you or did you not know what might be out there, being in a small town?
Emma Pratt:
I think I was kind of just scared to reach out for help because I had struggled for a long time growing up and I kind of just thought that if I reached out for help, it would kind of just, I don't know how to describe it. They'd think I'm, I don't know the word, like a freak or something, and then they'd throw me in the hospital or whatever it might be. So I never really reached out for help before it got to the point of the suicide attempt. I didn't really think anyone would care too much. I think I did talk to my family a little bit, but even they didn't. I don't think they had a clue how bad I was actually struggling.
Emyle Watkins:
Mom, you're nodding.
Amanda Marie:
Yeah.
Emyle Watkins:
Do you want to talk a little bit about what that was like for you as a parent?
Amanda Marie:
It was horrifying. Emma, I think we always knew Emma, she was just an anxious child. I think even from infancy, it was really challenging for her to self-soothe. And Emma did not have the easiest upbringing as far as her young years, there were things, trauma in my life that I didn't deal with in the best way, so I was not always the most present and best mom. And I can imagine Emma, she didn't feel like she could really openly tell us how bad that she was struggling. There were just so many things, like life was happening. And so we knew, obviously we knew because of things that I was going through and other members of our family, we knew she was having a hard time with it, but never in our wildest dreams did we imagine that that would be the coping mechanism that seemed like the most reachable for her. Never in a million years.
And I remember, and we did get Emma into counseling, I think around 10 or 11, but again, it was very basic, like rapport building and some sharing of feelings. And I don't even believe the therapist really had any major concerns about it leading to anything. I think she wasn't really on the radar at school. She was a quiet kid. She was a rule follower. She wasn't a troublemaker. I think a lot of times, sometimes those kids do get kind of left behind because they're not making the loudest noises.
And it was a shock to us. I remember the night of Emma's first attempt, she was actually, I was getting her baby sister to sleep. She was 12 weeks old at the time. And I remember passing by Emma's room and she was in there with her brother and they were dancing and singing to this horrendous song. It was like Kidz Bop or something. And I remember pausing in the doorway and I was holding baby sister and I remember thinking, "Ah, she's back." That's a spark. That's a spark in Emma. And it was like the first time I had really seen her let some of that weight go, that stress that she had been carrying around. And I remember I went to sleep fine that night. I was comforted by seeing her with her siblings. And then little did we know a couple hours later in the middle of the night is when we were all awoken by sheriffs and paramedics in the house. So it was nothing that we anticipated by any means.
Emyle Watkins:
Thank you for sharing that. I want to get into the systems at hand here that it sounds like could have served you both better, but if you could go back to that time period, is there anything, Emma, you'd want a younger you to know or, Amanda, what you'd want a parent to know?
Emma Pratt:
For me, it's a cliche, but I would've just told myself that it gets better. I kind of thought that I would just be stuck feeling so horrible for the rest of my life. Even through my teenage years, I'd be like, "It doesn't matter that you're getting older. It's not getting any better." So I felt very hopeless for a very long time. I don't remember where I was going with that, but yeah.
Emyle Watkins:
What gives you hope now?
Emma Pratt:
I am very passionate about my job. I really love that I get to help other young people. My boyfriend, he's really helped me. Really, getting to watch my siblings grow up has been the biggest gift though, honestly, because I never thought I would get to see my little sister be ... She's like a preteen now. I never thought I would get to see that. So yeah, I would've told myself to just hang on a little longer and that it'll get better.
Emyle Watkins:
Mm-hmm. Amanda, do you have any message to parents who are kind of at that crossroads knowing everything you know now?
Amanda Marie:
Yeah. So I wish I wouldn't have allowed the feelings of shame or guilt to prevent me from being louder about getting Emma and our family the help that we desperately deserved. It's a very isolating feeling. Nobody exactly puts it on billboards when you're struggling and you don't have that perfect cookie-cutter life. So I would tell parents, there are parents like me out there, that there is no judgment and it can get better, and be the squeaky wheel. Don't accept less than what you know your child deserves and your family deserves. Speak up if things are not working and advocate. Go to the top. Don't accept something that is less than what you need.
Emyle Watkins:
And after your attempt, it sounds like it kicked off several years of being in and out of a system that was helpful in some ways, but from what you've told me, it also sounds like it was difficult in many ways. Can you talk about that?
Emma Pratt:
Yeah. So at the hospital, the short-term stays, it's just, like I said, the younger siblings aren't allowed to visit. And then my parents and grandparents, they lived a little bit farther away. So you're super, super isolated. But the big thing is that they're set up for short-term stabilization kind of stays. And I spent months at Strong in those units. I would have staff bring me a cup of air just because I wanted some fresh air. I had one room that when I was there for three months, I started whittling a little hole in the window to get fresh air. So it's just really isolating and it's honestly dehumanizing. I didn't know what I deserved to just be locked up on a unit for months at a time. It felt more like a punishment than a, "Here, we're here to help you."
Emyle Watkins:
Can I ask why they held you there so long? Was it because there weren't enough supports in the community to discharge you to?
Emma Pratt:
Yeah, because we were waiting on a bed and other placements. So it was kind of just the waiting game. We just sat there and waited until something opened up.
Emyle Watkins:
Can you talk about what some of those placements are or could be in the system for young people?
Emma Pratt:
Yeah. So I went to Children's Psychiatric Center. I'm so used to saying CPC. But I went there twice actually. So that's the diagnostic kind of placement. I don't remember exactly how long I was there. I think like nine-ish-
Amanda Marie:
Six months one time, nine months the other.
Emma Pratt:
So the first time I got discharged to home that time, I'm pretty sure. But the second time, they kind of realized I needed a little bit more, so I went to residential after my second stay at CPC. And I was there for almost a year-ish. It was winter when I went in, Christmas when I got out.
Amanda Marie:
10 months-ish, I believe. Yep.
Emma Pratt:
Yeah.
Emyle Watkins:
Can I ask, especially for our listeners who might not know, what is a residential setting like and what kind of level of care do you get there?
Emma Pratt:
So you're in a home with a group of other kids. I think there were probably like 10, 12 other kids when I was there. And you live in this cottage and there's staff on site. Some are more supportive than others, like always. You have a psychiatrist and therapists and everybody you need right on site. And then they had a school program as well. So I went to school at residential. So it's really just kind of all of the supports you might need just in one place. I don't know if I described that correctly.
Emyle Watkins:
Yep. And do you mind me asking, were you placed somewhere close to home or did you have to live away from home?
Emma Pratt:
I was in Rochester when I was in residential, so still about ... It was a little farther than Rochester, so it was like about an hour.
Emyle Watkins:
What was that like for your family?
Amanda Marie:
It was difficult. It was difficult because, again, we had to arrange when we could come visit. If Emma was having a hard day, I wasn't able to just show up there. So it was financially a burden on the family. Well worth it, but there were times where we did have to figure out, am I going to have enough gas money to go see Emma or pick her up and have her come back home for a home visit once she got to that point? I wasn't able to work because just kind of navigating the systems and being a support for Emma was a full-time job. So financially, it was hard. And then being away from her was extremely hard.
And again, we called each other religiously every single night, but those conversations weren't exactly private. I mean, there were other kids around and staff kind of monitoring what was going on. So it was hard to have some of the raw conversations that we wanted to have besides just the visits. I was a very engaged parent, so I wanted to be present for all the planning. So in addition to going up and seeing her, I made it a point to be present for clinical visits, family therapy, any kind of care coordination, treatment planning meetings. So it was a lot to manage.
Emyle Watkins:
Can I ask what difference that made having a parent who's so involved?
Emma Pratt:
I don't think I would've been able to get through it without her, honestly. I saw a lot of kids who they weren't lucky enough to have family members who would come and visit. So I don't know. I think it would be even more lonely and hard, because at least I had somewhat of a connection to the outside life, but there were some kids who they were there for a year, a year or two at a time, and they didn't see their family at all because they were six plus hours away from their family. There were kids there who lived in Pennsylvania and they didn't have services available, so they had to come up and live six hours away from their family. So, yeah, I felt grateful that I did get to have the time that I got with my family, but still very difficult.
Emyle Watkins:
Yeah, absolutely. I just bring that up because there have been studies that show that the family support makes a difference and when distance and money are a barrier for a lot of people. Can I ask what the farthest placement you had personally was?
Emma Pratt:
That was CPC, right?
Amanda Marie:
CPC.
Emma Pratt:
Was the farthest?
Amanda Marie:
About an hour and a half.
Emyle Watkins:
In West Seneca?
Emma Pratt:
Yeah.
Amanda Marie:
Yeah.
Emyle Watkins:
And when you did go home, what were the services like in your own community?
Emma Pratt:
Still kind of just, I only had a care manager I would see once a month for maybe 20 minutes. They would kind of just say, "Hey, how are you doing?" And that was about it. I had the skill builder. I got lucky I had a really good one, but still it just wasn't enough. A lot of it was just going out in the community and hanging out with other kids who were struggling, which it was nice because I could see I wasn't alone, but it wasn't necessarily what I needed really.
Amanda Marie:
So when Emma was discharged from residential, we had private insurance, so in order for her to be even eligible in the first place for a lot of these services, we had to go through a waiver process to get her eligible for, they call it family of one. It might be different now. So it didn't take into consideration our income. So she got Medicaid, but when she was discharged from residential, the Medicaid ended because she didn't qualify for it anymore. She didn't meet the level of need. So then the access to the services she need to maintain stability, she didn't have that anymore. So even after she came home from residential, the lack of access to services, she still was ... We were back and forth to the hospital and the inpatient unit, thankfully those times they got fewer and far in between. But being at that point when you were discharged from residential, I think you had been out of home placed for, it was over maybe a year and a half at that point, but then you're kind of discharged from residential with a, "Call us if you need anything." We went from such a high level of care to virtually nothing. That was difficult.
Emyle Watkins:
And you work as a family advocate then?
Amanda Marie:
I do. I do.
Emyle Watkins:
With both of you working in advocacy and working with families, do you find that there's a lot of families who are kind of in this gap area of they have private insurance that doesn't work in some situations where they then need state services that they can't always get?
Amanda Marie:
Yes. So I work for Hillside and I'm blessed to be able to be part of multiple mental health committees across multiple counties. And this is a discussion we have when families are presented or come and seek services, we have to stop and ask ourselves what type of insurance they have because that's a deciding factor in what is offered to them, which is absolutely absurd. If you're struggling with a mental health issue, the last thing that should matter is what type of insurance you have. These things should be accessible for anyone that's struggling. So absolutely, it's absurd the amount of families that can't access because of what type of insurance they have.
Emyle Watkins:
Is that something you've experienced too, advocating for young people?
Emma Pratt:
Yeah, I see it all the time, unfortunately.
Emyle Watkins:
And talk to me a little bit about, now both being in these advocacy roles, what state services are available to young people and what's actually accessible?
Amanda Marie:
So there's a menu of services that are on paper available to families. Like the CBHS, the Child Health Behavioral Health Services, there's a menu of probably five to 10 different services, so like skill building type, care management, in-home family therapy type, clinical support services that on paper are available, but a lot of agencies have de-designated from providing these Medicaid services because it's not sustainable at an agency level. The state has failed to provide adequate funding for agencies to be able to maintain offering these services. So there's not a lot available at all, actually not a lot accessible.
At the most, you may have a county that has care management and skill building. There are a handful of Youth ACT teams across the state. They can only serve 15 to 20 kids and often the counties are shared. There might be a short-term crisis service that's available for maybe four to six weeks after a youth is discharged from the hospital or their pending placement, but that's time limited. We are blessed, family advocates, we operate off of a grant-based program. So we have providers in all the GLOW counties, but as far as clinical-intense services, they just simply don't exist.
Emyle Watkins:
And it sounds like especially in rural areas.
Amanda Marie:
Especially in rural areas. Yep.
Emyle Watkins:
And can you talk a little bit about the ACT or ACT teams? Because I feel like people aren't as familiar with those.
Amanda Marie:
Yeah. So Youth ACT, it's a multidisciplinary team. Often it depends what area you're in and what is staffed, but the idea is that it's a highly intensive team of care coordinators, clinicians, family advocates, youth peer advocates. If you're able to get one staffed and they meet families in the home, it's supposed to be really intense, collaborate with all the different systems that are involved. The idea is to really address whatever is going on that is a concern that might lead to out of-home placement. So kind of mitigating some of those risks of having to go to the hospital or being placed in residential, things of that nature. So there's only a couple of counties. I know Erie County, Steuben, Chemung has a Youth ACT team, Cortland, and there's probably more that I just don't know about because they're not with Hillside.
Emyle Watkins:
Emma, I'm wondering, when you turned 18, what happened to your services that you were receiving or how did things change for you?
Emma Pratt:
They really just kind of disappeared. The one therapist that I had had, she went on maternity leave and I just kind of never got access to a therapist again after that. No really psychiatrist or anything, I don't think, after that either I was on medication and everything and I had to basically take myself off of the medication because I didn't have providers anymore. So it was pretty much non-existent once I turned 18. I went to having the therapist, the psychologist, care managers, all of that, to nothing in the matter of days.
Emyle Watkins:
And there was no transition to adult services?
Emma Pratt:
No, they kind of just said, "You're 18 now, bye." That's basically ... Yeah.
Emyle Watkins:
Can I ask how you coped with that or what you did eventually to get any services that you felt like you needed as an adult?
Emma Pratt:
I never really pursued services again after I turned 18, but I think I was just so burnt out navigating the system for so long. I kind of had this mindset of, I learned all these skills and I gained this super awesome toolkit and I kind of just managed it on my own. I had learned a lot of skills and I used those skills when I needed to, and it got very rough there at times, as you can imagine, but I knew that I had bigger things in store for me, and if I wanted to get there, I had to get there myself. So, yeah, it was really just a lot of perseverance on my end. I kind of just had to do it.
Emyle Watkins:
And do you mind me asking today, what are some of the things you do to manage your mental health?
Emma Pratt:
Like I said earlier, a lot of the art and the reading, I spend a lot of time outside. It's very grounding. Spending time with family. I just make it a point to do things that make me happy. Especially with the work that I do, you see a lot of ugly. So I make a lot of time to do those things that actually bring me joy and they kind of stack up on top of each other and it fulfills me. So, yeah, just making it a priority to take care of myself as well.
Emyle Watkins:
It sounds like it's some of the things you were also denied when you were in treatment, like fresh air.
Emma Pratt:
Yeah, exactly. Yeah. And with my flute, I couldn't play that or anything in the hospitals. So that was a very, very big thing for me, my flute. So when I was in residential, I was able to still go to my flute lessons and stuff like that. I really loved my flute teacher. So when I was in the hospital and stuff and not being able to play my flute, or I didn't have my books because they had staples in them, or I couldn't have my art supplies, or anything like that, or any fresh air. They kind of take away everything that does bring you peace. Yeah, so just kind of taking my life back once I turned 18.
Emyle Watkins:
Thank you for sharing that. And I'm wondering, how does the system need to evolve for young people like you, especially with the budget coming up? If you could sit down with the governor right now and tell her what young people need, what would you say it is, especially rural young people?
Emma Pratt:
Obviously, all the budget, there needs to be the services, but I think people need to listen to the youth and the young adults. I think even now, we kind of get swept under the rug, like, "You're so young, what do you know?" But we know. We know exactly what we need and we know what needs to be done a lot of the time. So I say the youth voice needs to be heard and considered.
Emyle Watkins:
And can you talk a little bit about those services you'd like to see in the budget? I know that a big thing is that in recent years, more so on the adult side, we've seen a push towards more inpatient beds while a lot of advocates have been saying, "What about when people are out of inpatient? What about those community-based services?" Can you talk a little bit about, especially what you'd like to see for communities like the one you grew up in?
Emma Pratt:
I'd like to see more peer support. I mean, that wasn't really around when I was getting all these services. I think it would've made a huge difference to have another young person sit across from me and say, "I see you. I've dealt with similar things. You are not alone." So I think there needs to be more youth peer and family peer programs available because right now it's really, there's not many. There's like Hillside and my program isn't even technically a youth peer advocate program. I kind of worked it into there myself because it's something I'm passionate about. So yeah, more peer support, really just more intentional. There's the care managers and stuff, but I think it needs to be more intentional time spent, not just, "Hi, how are you? Goodbye." Yeah.
Emyle Watkins:
Can you talk a little bit more about what peer counseling and peer support is? I know that a lot of people don't know about it. I started seeing a peer last year personally and I was surprised by how much they can help with. So can you talk a little bit about that program?
Emma Pratt:
So for me, it's all about empowering the peer to use their voice and build self-advocacy skills and coping skills and all of the skills that you need to be successful. For example, there are kids who are absolutely terrified to attend their school meetings or treatment meetings. They feel like their voice won't be heard or they're scared to use their voice for whatever reason. So I do a lot of work with the youth I work with to come up with strategies to be able to use your voice in meetings like that. If they're sitting next to me, write me a little note and let me know if you want to say, building steps, and eventually they're talking in their own meetings and they're using their voice. So it's really building those skills to be able to advocate for yourself and get what you need and eventually you won't need a peer like me anymore. That's the goal, you know?
Emyle Watkins:
And can you talk a little bit about the process of becoming a peer? I know that many become certified through the state.
Emma Pratt:
Yeah. So it's families together. I don't know if there's other programs.
Amanda Marie:
Just for the youth peer, I think, and family peer.
Emma Pratt:
Families Together, you go on their website and they have it all laid out very nicely, it explains the whole process. There's quite a bit of training that goes into it. You'd be surprised. I'm helping a lot of people get into youth peer right now and they're all like, "Oh, man, this is a lot more work than I thought." But it is worth it. You gain a lot of knowledge and a lot of confidence through the trainings. Before, I was still so unsure that anybody would listen to me. What do I have to say? And through the work I've done, I think I am fully transformed. I have so much more confidence in using my voice and that what I say matters.
Emyle Watkins:
Do you feel like it changes things for people to have someone ... Because I know the point of the peer system is to have someone who's been through it themselves, right?
Emma Pratt:
Yeah. Yeah. I hear that a lot. Kids will say to me ... I'm trying to remember. "It's so awesome to see that someone who went through things that you went through, you're here and you're doing these things. Maybe there is hope for me." So that's kind of like the whole thing is that hope and the empowering and all of that. So I think it is super helpful to be able to know that you're not alone and that other people have experienced similar things, because no story is the same, obviously, but even knowing that even semi-similar things are happening to other people is helpful.
Emyle Watkins:
And Amanda, you also became a family advocate?
Amanda Marie:
Family peer advocate. Yep.
Emyle Watkins:
Can you talk about what that process was like, why you decided to go into, and what your work is like?
Amanda Marie:
Sure. So process is the same as what Emma spoke about. We get credentialed through Families Together of New York State. And it's a pretty intense training process. And initially learning to strategically share your lived experience, to be able to benefit the people that you're working with, learning how to navigate the systems that we're kind of thrown into or presented with in a way that we understand the structures, but then we also are empowered enough to kind of push back a bit and say, "I'm speaking up against how this is just not working." What drove me to become a family peer advocate is, I remember sitting at one of the meetings at the hospital with Emma and her treatment team, and their guidance at the moment was to discharge Emma. And I knew in my heart that if she was discharged, then she would attempt and probably be successful or complete that third time.
And I spoke with my family advocate who I was assigned and she empowered me to ask some very specific questions. She used her experience in knowing the system and how the decisions were made at the other end of the table. And I asked some very specific questions and it changed the minds of the people that were making the decisions about the next steps of care for Emma. And it was heartbreaking that that led to a residential placement, but I am so, so thankful because she's here, and that came from my family advocate. So I knew the power in having someone walk alongside me that respected my autonomy as a parent and someone that is raising their family in the way that they see fit, someone that understood my passion and encouraged me to be louder in the moments where I kind of wanted to be meek and hide in the corner and just accept what was given to me. So I knew I wanted to be the person that was there for me in those moments. So, yeah, that's why I decided to go on being a family peer advocate.
Emyle Watkins:
And what are some of the challenges to getting the peer system to reach more people? Because I know that a lot of peers are, if not all of them, are through nonprofits usually, not always through mental health organizations. You kind of have to know about it to ask about it. And then also I know the pay is often rather low, to no fault of those agencies. Can you talk a little bit about that?
Amanda Marie:
Sure, absolutely. So first and foremost, we need families to know that we exist and we need the backing of the state to really push the availability of peer support services and their importance. And we need other providers to get on board as well about how valuable our services are. And I think that we have seen headway in that area over the last 10 years, but there's definitely some, there's some gains to be made about having other people realize that the true value of peer support and then being willing to pass that information along.
Historically, peer support services have been paid dramatically less than other mental health services. And we would like to see a change in that. We would like to see some equal playing field so that people can go into this role and do this work and be able to live a lifestyle that's manageable with their family because that's what often turns people away is that you have to have the passion for the job, you also have to make a living wage. And unfortunately for a lot of people, it's just they're not able to take the job because it's not paying equal to what maybe some other roles might.
Emyle Watkins:
Yeah. And Emma, can you talk a little bit about, especially as a youth peer advocate, I know that those are even fewer and farther in between and that Independent Living of the Genesee Region started their program just a couple years ago.
Emma Pratt:
October of 2024, I believe. I started when the program was super fresh and new. So I've been there since it started. And yeah, there's not a whole lot of youth peer programs out there. And the ones that are, a lot of them are just part-time and that's not really ... You can't make a living off of part-time most of the time. So yeah, it's even harder for youth peer advocates because I think a lot of people, I've heard that there's not a lot of buy-in, I guess, with a lot of agencies, and that's why they kind of don't have the youth peer advocate as often as the family peer advocates.
Emyle Watkins:
Well, and from my understanding, it seems like these agencies don't make money off of it because you're not billing someone's insurance or Medicaid.
Emma Pratt:
Yep.
Amanda Marie:
Yeah. So most, I mean, there are Medicaid-reimbursable peer support services, but like I mentioned before, a lot of organizations have de-designated from providing those because actually agencies and organizations, it is costing them money every time that they're providing a peer support because they're not being reimbursed what they're actually paying out to be able to provide the service. So the hourly wage or the transportation or all those other things that go into it, they're not being, so it's not sustainable.
So a lot of us are working in grant-based programs. And even with those grant-based programs, we haven't seen increases to those in, let's say, 15, 20 years. So we would love to see an increase to the amount of money that's put into those grants so that we can expand what we're offering to families. I mean, there have been multiple cost of living increases over the last 20 years, but we are still providing the same amount for grant-based peer support.
Emyle Watkins:
Right now, the governor and the legislature are meeting to decide on final aspects of the budget. And it seems like every year I see this debate between, do we fund more inpatient? Do we fund more community-based services? I'm wondering if you both have any thoughts on, is there a balance there? Should one be prioritized over the other? How do you make these services actually work for people?
Amanda Marie:
So I guess first I would ask, why can they not both be funded? Because there is a need for both. To be just frank, the money is there. It has simply not been a priority to invest those funds in the youth mental health system, which it's astonishing to me because regardless of whether we fund the services now, these kids are our future, these families are our future, and if we're not funding the program, service, if we're not putting something into place now, you're going to fund other programs or systems to be able to assist them later in life. So why not be proactive and preventative?
But if I had to choose one, I would say definitely the investment in community-based services, because the last thing a family wants to do is to have to see their kid in a hospital or a residential facility. I know that there have been some articles kind of circulating that have maybe painted parents that are refusing discharge of their kids from hospitals in a light of just abandoning them there. And I'm not saying that that never happens, but it is simply not the case for the majority. Sometimes parents are forced to make a decision about the safety of their child, their safety as parents or caregivers, or if we take just our situation, absolutely I would refuse discharge of my child if I knew that kept her alive. So families are forced to kind of use their children as leverage in getting the state to see we need more than what you're telling us is out there. So I would definitely like to see an increase in then community-based services.
I would also ask, let's stop reinventing the wheel and stop restructuring things that we knew didn't work 10 years ago. If we were to put the money into fixing the system that we have instead of creating these bright, sparkly, glitterly, these new systems that realistically might not work anyway, so that there's a lot of waste going on. But I would ask that it be made a priority. It's just not, frankly, it's just not been a priority.
Emyle Watkins:
Yeah. Emma, do you have any perspective on that, what you'd like the balance to be, or if there's one that you feel like needs more resources than the other right now?
Emma Pratt:
I also think both deserve the funding, but I do think there needs to be more of a focus on the community-based services. I think the inpatients and the residentials, I think it should be last resort, honestly. And a lot of times it's kind of just a bandaid. A lot of kids who really could use those community-based services and all of those things, they're kind of just getting thrown in the hospital and that's kind of the solution. So I think if there were more community-based services that can meet them where they're at, I think a lot of times kids wouldn't even end up institutionalized in the first place if they had access to those services when they needed it in the first place.
Emyle Watkins:
I know it's hard to look back. We can never fully know. But when you think about if you had had more routine services as a teenager, in your community, how do you think that would've impacted going to school and doing the things you love and staying out of the hospital?
Emma Pratt:
I think that there were a lot of times that when I wasn't getting the services, things would kind of just reach a point where I absolutely had to go to the hospital. So I think if I had had more of those community-based services and connections in my community, it could have kind of caught me before I got to that crisis point. And I think a lot of my hospitalizations probably would've been avoided if I had the support that I needed because it really was just, I had gotten to a point where I was struggling so much, it just wasn't safe for me to be home anymore. So I think there needed to be more of those preventative things than just like, "Things are so bad right now, go to the hospital." I think there should have been more of a in-between.
Emyle Watkins:
And Amanda, what difference would that have made for your family emotionally, economically, overall?
Amanda Marie:
It would've made a huge difference. Emma and I, I am so thankful that we get to do what we're doing. It is kind of cathartic for us and it's still a healing journey. Every time we talk about it, we would've been able to avoid a lot of traumatic experiences sitting in CPEP facilities for days and days at a time, sleeping on benches, getting a call saying, "Your kid's been transported in the middle of the night to a different hospital an hour and a half away because they had a bed open." This constant state of not knowing and fear. She would've been able to see her baby sister in her formative years. Man, it would've been amazing to be able to have those things and not have to wait until it got so bad that your only option was to go to the hospital. It would've changed a lot of things for us.
Emyle Watkins:
What advice would you have to people out there who are listening to this? Maybe they are in a rural part of New York or they feel like they can't access these services. Maybe they're a child or a teenager who's going through a lot. Even if we can't change the systems, what do you want them to know about what they can do right now?
Emma Pratt:
My biggest thing is always, like I said, your voice has power and to use it. Really, that's the main thing for me is you know what you need and you know what's helping and you know what's not helping, to use your voice and the skills that you do have. And honestly, maybe some people don't have the skills, and it's sad, but there are ways to build those skills and to do the research, and there's information out there. So really just use your voice and advocate for yourself. You are your own best advocate.
Emyle Watkins:
And Amanda, do you have any message to parents?
Amanda Marie:
Yeah. Seek out any opportunity that you can to advocate for the change that we desperately need. Please don't ever think that your voice doesn't matter. There are hundreds and hundreds and hundreds and thousands of parents just like you sitting at home thinking, "What difference does it make if I say anything?" But I promise you, the more of us that can get together and we can use our voices to be agents of change in the system, we need everybody to rally. If not now, then when? So seek out the peer advocates in your area and seek out opportunities to use your voice to create change.
Emyle Watkins:
Thank you both so much for coming in today.
Amanda Marie:
Thank you.
Emma Pratt:
Thank you.
Amanda Marie:
Appreciate it.
