New bill seeks to address problems in California’s developmental disability system

Click the play button above to hear a conversation about the process of investigating accusations of abuse in group home for people with developmental disabilities, and a new State Assembly bill, which proponents say will provide badly needed accountability.

Transcript

HANA: Hi Chris.

CHRIS: Hi Hana.

HANA: Ok so tell us about this story you reported on. What did you find?

CHRIS: Yeah, well the story really focuses on this one woman. Her name is Katrina. She’s 43 years old. And she lives in a group home for people with developmental disabilities who need a really intense amount of care. Like 24 hour monitoring. Katrina has autism, plus some other conditions, and even though she makes sounds, she’s not actually able to talk. I have some audio from when I visited her, and there was this special moment when she walked right up to me and took my hand, and kind of walked me around the house a little.

AUDIO: Hey Katrina, how are you? You doing ok? Oh she wants to go for a ride. She’s a fan of the van.

HANA: It’s great to be able to hear her in that clip! And is that Barney I hear in the background?

CHRIS: Yes! She’s obsessed with Barney, she watches it all the time. Her parents also say that she loves Michael Jackson music videos.

HANA: I mean who does not love Michael Jackson music videos? Does she have a favorite one?

CHRIS: That I don’t know, but I’m gonna guess thriller maybe?

HANA: That’s probably a safe bet. Back to what we were talking about, what happened in this home, Chris, why were you looking into it?

CHRIS: Well, about a year and a half ago – so this would be February 2022 – I got an email from Katrina’s parents. Their names are Pat Turner and Elaine Sheffer – Elaine is Katrina’s stepmom. They’d heard some of my previous reporting on the disability community, and when they reached out they said they wanted to tell me about some experiences that Katrina had had at this group home before, where they say she had been abused. When we talked, they told me well “fortunately Katrina is safe now, she’s at this special kind of group home that has lots of resources and all these regulations.”

But then, and I’ll never forget this, I get a text from Elaine one day and it just said, “It’s happening again.”

HANA: That’s a lot to hear. That’s scary.

CHRIS: Yeah, it was kind of chilling in the moment. And from that moment, what had been a story about something that had happened in the past, that we were going to be retelling, became an active investigation… about something that was happening right then.

HANA: How did your approach have to change because of that? Because as a reporter you were getting more than you bargained for. This was a lot.

CHRIS: It really was. I mean things just became much more urgent. The focus shifted to me really talking this couple through documenting as much as they could, as things were progressing, and then sending me any evidence they had. I also had to be really careful because Katrina’s parents had also contacted the local Sheriff's department and they didn’t want anything to come out publicly really until recently. They were worried about spooking the company running the home, and they wanted to let that investigation play out.

HANA: And so at this point, what are this couple – Pat and Elaine – what are they alleging?

CHRIS: So the big event that sets all off is that Elaine gets some messages from a staff member who works at the home – one of Katrina’s caregivers. And it’s this sort of urgent message that this caregiver – her name is Kylie – she’s found something really troubling with Katrina.

HANA: And you have some tape here that we’re going to play. It’s a piece of that story that picks up right there.

AUDIO: Elaine forwarded me the email from staff member Kylie Leblanc. It describes a series of abusive incidents. The attached photos show Katrina looking mournfully at the camera, with a deep raised purple blotch spreading below her eye. Other photos show dozens of massive holes in the walls. I remember feeling sick when I first saw them.

Kylie agreed to talk with me. 

Kylie: Um, when I walked in, Katrina had a black eye and I was like, oh my God. And my coworker said, Kylie, it's not even like the worst part.

This coworker took her to see Katrina’s room, where, along the wall, there was a row of holes.

KYLIE: From her banging her head in.

Kylie says the row of holes was right around 5 feet, Katrina’s height.

KYLIE: I said, how did she get this black eye? And he goes, I don't know. He goes, but I know people are locking her in the room. They are putting her in her room. They're closing the door and holding it shut while sitting in a chair.

Kylie’s unnamed coworker decided not to speak to me on the record. And when Licensing investigated this incident, the accused employees denied the claims. 

HANA: Wow, that’s some disturbing tape. And so this staff member, she decided to speak to you about this on the record.

CHRIS: Yeah. She described this whole black eye incident to me in great detail, and by the way there is also evidence that Katrina also suffered a concussion from this. That was one of the big turning points in the investigation.

HANA: So then what was the ultimate outcome of this investigation?

CHRIS: Well, through a lot of public information requests, I was able to get a hold of hundreds of pages of documents from state regulators, and they really substantiate a lot of the claims that Kylie, as well as Pat and Elaine have made against the home. Though not all of them.

And they really lay responsibility for this at the feet of the company that operated the home. It’s a national healthcare company called Sevita Health. And in this series I go much more in depth about that company and their track record. And I try to understand how these events could even happen, despite what is supposed to be really stringent oversight from state regulating agencies.

HANA: And that series is out now. You can listen to it on our podcast feed, just search for “Crosscurrents” in your favorite podcast player, or go to our website, KALW.org.

So, Chris, let’s switch to a related topic — there’s a bill that is making its way through the state legislature right now, and it’s actually connected to some of the issues you uncovered in your reporting. The bill is called AB 1147, or the Disability Equity and Accountability Act. That word “accountability” to me is just so important after hearing about this investigation. What can you tell us about the bill?

CHRIS: Yeah, so AB 1147 was introduced back in February by state assembly member Dawn Addis. And the proponents of this bill say it will address some of the really serious shortcomings of California’s developmental disability system.

My reporting was really focused around this one home and this one area – that being Sacramento. But, the state agency that is responsible for the whole system – that’s the Department of Developmental Services – they’ve been under fire from kind of all different directions recently.

HANA: Ok, and before we get into those issues, how big is the developmental disability system? What scale are we talking about here?

CHRIS: Great question. So right now in 2023, it serves about 400,000 people with developmental disabilities — and those are conditions that start in childhood and affect people for their whole lives. Some examples of a developmental disability would be autism, cerebral palsy, or Down Syndrome. And the Department of Developmental Services, or DDS for short – it has a budget of about $14 billion this year.

HANA: That’s a huge budget. And you mentioned DDS has been under fire from all different directions recently. What are the criticisms of this system?

CHRIS: Well, the first kind of salvo was this pretty scathing report from the State Auditor’s Office, back in June 2022. And to understand it, I need to explain a little about how the system works. So under DDS is this network of 21 nonprofits called regional centers. They’re spread throughout California, and they’re kind of the hubs through which all the funding and services flow through. And so if you’re someone with a developmental disability, or a parent of a child with one, you go to your local regional center, and you get a case manager, and they’re supposed to coordinate all of your services, which the state ultimately pays for.

HANA: Ok so what kinds of services?

CHRIS: It could be something like speech therapy, or behavioral therapy, all the way to specialized residential homes like the one Katrina lives in.

And, so among other things, the State Auditor said that regional centers, along with DDS, are failing to monitor their vendors at an adequate level. Vendors being all those service providers.

HANA: So these are things like check ins, inspections, things like that?

CHRIS: Exactly. The state auditor looked at 3 different regional centers. And none of them could show that they were consistently performing these quality assurance inspections at the level state law requires.

HANA: None! That’s shocking!

CHRIS: It is. The state auditor also found that people and families weren’t being informed about their rights to file complaints, or even the process for how to file a complaint.

HANA: Ok, so DDS has been taking heat. This state audit is kind of one source of heat — where else has that heat been coming from? Who else is pressuring them?

CHRIS: The pressure on DDS really got ratcheted up last October because this independent oversight agency called the Little Hoover Commission launched a months long series of hearings to look at how DDS is failing in all these different aspects of its role.

And they also found some pretty glaring systemic failures.

HANA: Like what?

CHRIS: Well, for one they found that there isn’t a lot of consistency across the 21 regional centers. So as a person with developmental disability or a parent, the services you get, and the quality of those services – basically your overall experience – it’s really dependent on where you live. In some cases, people who lived just a few miles from each other got completely different levels of funding because they fell within the jurisdiction of different regional centers.

HANA: So it varies depending on where you are, and I imagine it also depends on who you are… were there any racial disparities?

CHRIS: Absolutely. The committee cites a report from UCSF, which found that people of color were less likely to receive any services than white populations, and even among those who did receive services, the actual expenditures for people of color were way lower than for white people.

HANA: Wow, so the services you get really depend on where you live, the color of your skin…

CHRIS: Yeah, as well as what language you speak. That was another huge factor. And an issue that kind of underlies all of this is actually about technology.

HANA: Technology?

CHRIS: Yeah, the system that the department uses to track data – like people, services, and outcomes – it’s actually decades old. It was built back in the 80s. All of the researchers I’ve had a chance to talk with, they all say it’s really difficult to understand what’s really going on in this system – how many people are or aren’t getting served, and how well they’re doing – because the system for collecting data is so out of date. DDS tracks some measures, but it’s not comprehensive, and then each Regional Center has their own data collection methods.

HANA: So the systems don’t track everything, and they don’t necessarily talk to each other very well either?

CHRIS: Yeah that’s right. And this is something that DDS admits, you know, it’s something they say they’re working on, but it’s still a huge issue.

HANA: So let’s get back to AB 1147, the Disability Equity and Accountability Act. Does it address any of these issues you’ve talked about?

CHRIS: Well, it addresses some of them. One of the main goals of this bill is to bring more consistency to the system. So these 21 regional centers are all individual nonprofits, and they all have their own policies and procedures. This bill says, “ok DDS you’re going to do regular evaluations of regional centers and hold them all to the same standards.” And it really spells out the specific areas that they should be evaluated in.

Then it addresses the data tracking issue by putting a date on when DDS needs to come up with a proposal for a new data system by – and the date that they’ve set is 2025. It also requires that DDS consult with the community it serves as it’s developing the new system.

And it also tries to make regional centers themselves more accountable. Because regional centers are technically nonprofits, not government agencies, they are not subject to the public records act.

HANA: That’s the set of laws that allows anyone to access information from public institutions.

CHRIS: Yeah, exactly. Like, for instance, on this story I just reported on about Katrina, I was able to request reports and documents from DDS, but not the regional center. Even though a ton of information lives at the regional center level, they’re shielded from that public scrutiny. This bill would change that, and make those public information laws apply to regional centers as well.

And those are just a few aspects of the bill, it’s pretty extensive actually.

HANA: And we’ll have a link to a fact sheet for AB 1147 at KALW.org. So what does it NOT do?

CHRIS: Well, if this law had been in place a few years ago, it wouldn’t necessarily have prevented the abuse that Katrina experienced.

HANA: Why not?

CHRIS: Because there are already a ton of laws and regulations in place that are supposed to be guarding Katrina and others like her against that kind of mistreatment. So in that case, it’s not a matter of the laws that are on the books, it’s a matter of enforcing those laws consistently.

HANA: And is there any funding in this new bill for enforcement?

CHRIS: So right now, the legislature is determining how much this will cost, so the funding question is still pending. It’s up in the air.

HANA: And then what does DDS and Regional Centers, what do they all have to say about AB 1147? What’s been the response?

CHRIS: Yeah I asked them that, and they say that they don’t comment on pending legislation. However, DDS pointed out that they are already undertaking a number of reforms that address some of the very issues that AB 1147 calls out. Especially around racial disparities and developing a new data tracking systems.

DDS itself agrees that there’s a lot of work to be done. The difference is that this bill would codify it into law.

HANA: Alright, Chris Egusa, thank you so much for talking to me, and for your reporting.

CHRIS: My pleasure, thank you so much for having me.

Click HERE to read a fact sheet about AB 1147, created by Disability Voices United.