Richard Salame: How did you first learn about this story?
Justine Calma: I learned about this story because I’m Filipino American and a lot of Filipino immigrants and second generation folks work in developmental services. So I knew people who had worked as caregivers either in group homes or in adult day programs and had listened to folks talk about how difficult the work was. My partner worked in a day program for some months back in 2012 and it was a really, really difficult situation for him as a worker and for him to see how little support his co-workers had and also just how great the needs were of the population that they were serving with very little support. That was how I knew that there was something to look into when it came to these programs. And then a few years later when I went to grad school for journalism and was looking for something to dig into for an investigative master’s project I revisited this and started doing some digging, looking into public records for these day programs and found some really heartbreaking stuff in terms of how folks in the programs had been injured or had died preventable deaths. And I wanted to learn more about why all of this was happening.
Salame: For anyone who reads the story. It’s apparent how complicated and opaque the bureaucracy of developmental services is. Can you tell us a little bit about what that looks like and how you were able to map out the system through your reporting?
Calma: Yes. There are several entities that we’re holding accountable. So that was definitely a challenge, especially when it comes to accountability interviews. Instead of having, say, one person or entity that you are investigating and trying to hold accountable, there are multiple.
Where do I even start? California has a system where its Department of Developmental Services contracts out to these regional centers, which then in turn work directly with families to place people with developmental disabilities into day programs. I started more locally with those regional centers that work directly with clients and placing them, but they in turn report to the Department of Developmental Services. But then it gets even trickier from there because these programs can be either licensed or unlicensed. Those that are licensed are also overseen by the Department of Social Services. So there are these multiple agencies that are responsible for different pieces of oversight.
That can be really difficult. I mean it was difficult for me to navigate as a reporter. I can’t imagine how much more daunting that can be for a family member or for a person with a disability — particularly when it comes to reporting allegations of abuse.
Taking a big picture look was really hard because the Department of Developmental Services itself didn’t have an answer when it came to what were the outcomes of reports that came in that alleged abuse and neglect. They gathered those reports but then they’re forwarded out to social services or law enforcement and some of the regional centers are really responsible for oversight of the programs. I sort of had to be able to piece together from what each of these different agencies had because there wasn’t one person who knew it all, one person who had a sense of what was going on. There was not one central database that we were looking at but several. So it was definitely a patchwork trying to sort everything out.
Salame: Absolutely. So, you highlight a couple individuals in the article one of them, Patricia, stands out. How did you find Patricia and what was it like to work with her?
Calma: I started posting on social media and in parents and family support groups asking for people who may have had a negative experience at a day program and wanted to share with me what happened. And she reached out to me directly and sent me an email saying that she wanted to talk more about what happened to her daughter. So it kind of went from there. That’s how I was able to find her and there were some other families that reached out to me as well.
There were also court records for specific cases. If there was a lawsuit that was filed I was able to reach out to families through their court records. But it was pretty difficult to trace down an actual person who was in a day program because much of the public records that I got—[like] investigation reports into day programs—the names are redacted. I could see that someone had been abused or someone had been left alone, which led to them injuring themselves or choking to death. Things like that were happening but I didn’t have a name to the account, so reaching out through these parent support networks was super helpful for me to be able to actually get names and faces.
Salame: Some of the interviews you conducted were in Tagalog. Did having that second language change the outcomes of your reporting?
Calma: The cultural competency piece was pretty important. Like I said, especially in California, a lot of the folks who work in these programs… it’s kind of an immigrant workforce. A lot of folks are Filipino and so I had unique access for this because in other investigations into services for people with intellectual or developmental disabilities, if you’re in a group home or in a 24 hour institution, it’s really difficult for a reporter to just sort of stumble in and ask questions. But when it comes to day programs, they take outings and field trips to malls and libraries and parks. And so I could just kind of hang around those libraries and parks and malls and wait until I saw a group and approach the group.
It’s always odd for some stranger to come up to you. I come across that a lot, obviously, as a reporter. But, especially in this case, it helped a lot that I could relate with folks. I understood the culture. I can take cultural cues like speaking to someone with terms of respect that are common in our language. I could speak with folks in Tagalog and English and that helped break the ice a little bit and helped folks to trust me a little more.
Because it’s difficult for me to explain to workers why they should talk to me, right? Typically, in these types of investigations into abuse, it’s, a lot of times, holding the worker accountable for what they did to harm someone. Which I’m not saying isn’t the case. There’s definitely that happening. But I wanted to really hold the entire system accountable for how it was failing both the people that its entrusted to care for people with developmental disabilities and also those who work within the system.
I wanted to be able to humanize everyone who was involved. I think being able to understand the language and the culture a little bit helped me get some of that nuance of why these things were happening. Because workers were overwhelmed. Many felt like they had more clients than they could care for at one time. Oftentimes there’s very little experience needed in order to begin working in these programs, so there’s limited training and supervision. Then folks are out on the field on their own with three people that they have to care for at one time, all of whom may need constant, constant supervision. You’re balancing all of this, you’re getting paid minimum wage and oftentimes folks have multiple jobs so they might work at a group home at night and then work in a day program during the day. And so they don’t even have a lot of time to talk. The best time to talk with them was while they were out in the field in the day programs.
I think that being able to connect with folks in that way was really important. And I think for the workers themselves to acknowledge that, yes, sometimes abuse happens, was really powerful as well. I don’t think it’s a perspective that I could have gotten had I not been able to spend time with people in the field, talk with them in their native language, and dig into their stories as well.
Salame: What was your experience working with the IFUND like?
Calma: I really, really appreciated working with my editors. Kelly started me off and she also helped me organize everything that I already had from my previous reporting and make sure that I was really meticulous in how I went about, not just reporting, but gathering and organizing my findings. Then with Alissa, she really helped me feel like I wasn’t all alone in this.
In retrospect, I don’t know how I, as just an individual journalist, especially one not connected to a newsroom, [could have] gone about this as a freelancer. It was just really difficult to do independently. To have someone there who could help, who could help question and challenge my assumptions, who I could bounce ideas off of and if I sense that, “oh this seems kind of fishy. What do you think about this?” Or, “how do we troubleshoot gaining access into this piece?” Having that support was really, really important.
I think moving forward I would really love to work on another investigation in a team because it’s just really great to have all those different perspectives and minds coming together on the problem-solving pieces. I think that working with the IFUND I was able to get that support. Also I think, when it comes to being a freelancer, oftentimes, even if I pitched the story to a newsroom, if they don’t have editors who have done a lot of investigative work, if their focus isn’t on investigative journalism in particular, sometimes not all those resources are there. But with the IFUND, you know, this is what the IFUND does. So, the fact-checking was super thorough. There are attorneys onboard. My editors think through things with an investigative lens. That was super, super supportive. And I think that that’s unique to the IFUND versus if I was to work with another newsroom that may have picked up the story but doesn’t have a huge investigative toolkit.
Salame: Finally, what would you like to do next? Are there elements of the investigation you just completed that you’ll want to bring forward as part of another project?
Calma: Yes. Definitely. I remember one of my one of my sources, she’s a longtime advocate for disability rights and she told me abuse happens everywhere. It’s going to happen in the 24 hour closed door institutions, many of which are being shut down now. It’s still happening in these day programs that are supposed to be a better alternative for folks to be able to live more independent lives in the community and yet you know there’s still abuse happening.
It happens everywhere, unfortunately, and there are definitely pieces to look into more. I’m also curious about how folks from immigrant communities with disabilities are able to navigate the system, if there are language barriers.
One of the things that I was looking at in my reporting was how people who are nonverbal can be more vulnerable to abuse and also have a more difficult time representing themselves during the investigation and justice process. That kind of makes me wonder too if someone comes from a family that speaks another language, or they speak another language, or there are different cultural cues, how does that impact their experience within the system? I think there are just so many things to look into. When it comes to disability rights and the massive system that’s meant to provide supports but is pretty overburdened and sometimes struggles to meet its charge of helping people. So yeah, definitely, I think that there’s more to do.
And the other thing too is that I’m now a staff writer at Grist, so I’m covering, primarily, environmental justice and environmental health stories, which is really near and dear to me. I love that beat but I think that there are intersections as well, too. I did some reporting on how people with disabilities had been left behind in disaster relief efforts, both in the United States post Hurricane Sandy.
I talked to the woman in a wheelchair who was stuck in her apartment for days and days because the electricity was out and the elevator wasn’t working and she couldn’t get down the stairs. I’m really curious, too, about how disaster recovery can be more inclusive of people with disabilities. There’s a lot to look into.
Salame: Thank you so much for speaking with us.