When the United States moved towards deinstitutionalizing people with mental health conditions and disabilities, the idea was to create a network of community services that would allow people to live as integrated into their communities as possible.
The laws since then have affirmed a person's right to live and get treatment in the most integrated setting possible, but that doesn't always mean the services are there.
This week on the Disabilities Beat, we share the personal story of a young Western New Yorker, Emma Pratt, who found herself cycling through the state's mental health system. She shares her belief that the cycle could have ended if resources in her rural community had been stronger. We also speak with a policy expert who says a 4% funding increase in the state budget for mental health services could help stabilize the programs meant to help New Yorkers get help in their communities.
You can also hear or read our entire interview with Emma Pratt and her mother here.
TRANSCRIPT:
This is a rush transcript created by a contractor and may be updated over time to be more accurate.
Emyle Watkins:
Hi, I'm Emyle Watkins, and this is the Disabilities Beat.
When the United States moved towards deinstitutionalizing people with mental health conditions and disabilities, the idea was to create a network of community services that would allow people to live as integrated into their communities as possible.
The laws since then have affirmed a person's right to live and get treatment in the most integrated setting possible, but that doesn't always mean the services are there.
Emma Pratt:
Big thing is that they're set up for short term, like stabilization kind of stays. And I spent months.
Emyle Watkins:
From 12 to 18 years old, Western New Yorker Emma Pratt, spent time cycling through New York's mental health system. She says after a mental health crisis, she'd often end up in hospital programs far longer than they were designed for, waiting for placement into long-term treatment.
Emma Pratt:
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:
Sometimes the closest residential program was in West Seneca, an hour and a half from her family.
Amanda Marie:
If Emma was having a hard day, I wasn't able to just show up there.
Emyle Watkins:
Her mother, Amanda Marie.
Amanda Marie:
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 navigating the systems and being a support for Emma was a full-time job.
Emyle Watkins:
And when Pratt would finally make it home to a rural community south of Rochester, she didn't have the services she needed to succeed in the community.
Emma Pratt:
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.
Emyle Watkins:
Pratt believes if these community-based services had been better, she would've spent less time in the hospital.
Emma Pratt:
There were a lot of times that when I wasn't getting the services, things would 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've 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.
Emyle Watkins:
Luke Sikinyi, the Vice President of Public Policy at the Alliance for Rights and Recovery, which advocates for New Yorkers with mental health conditions, says it's hard to keep programs staffed even at the adult level.
Luke Sikinyi:
We've seen an average turnover rate of about 30% in our programs. And part of that is because it's been hard to keep up with rising costs for every individual and for folks who are working in this space, many of whom are making even less than someone might be making at McDonald's.
Emyle Watkins:
This year, advocates asked the state for a 2.7% targeted inflationary increase, which is essentially a cost of living increase for these programs and workers.
Luke Sikinyi:
This is really just the bare minimum that we need.
Emyle Watkins:
The governor came back proposing 1.7%. However, the Senate and Assembly have both voiced support for 4% across human services agencies, including mental health. Advocates are now pushing for that 4% to help fuel those community supports.
Luke Sikinyi:
I think a lot of focus goes to hospitals, because most of the wider community doesn't really understand that most behavioral health services are provided in community-based care settings.
Emyle Watkins:
As for Pratt, she is now in her early twenties. Pratt and her mother both became peer advocates, people who are trained to use their lived experience to help others with mental health conditions in their community.
Emma Pratt:
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.
Emyle Watkins:
Pratt has seen the difference that work can make, and she hopes the state will support more funding for community-based services.
Emma Pratt:
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:
For more on this story, visit our website at btpm.org. I'm Emyle Watkins. Thanks for listening.
