A St. Paul teen with autism was in the ER for 55 days. A new toolkit aims to help hundreds of other kids like her

CATHY WURZER: Last year, more than 1,000 children with mental health issues or developmental disorders had extended stays in Twin Cities emergency rooms because they had nowhere else to go. Some were in an ER for months. A disproportionate number of the kids in this situation, which hospitals call boarding, are Black or Native American, and many are in foster care, according to a new story from Sahan Journal.

The article begins with the story of a 14-year-old with autism who has repeatedly been stuck in the ER, most recently for 55 days. Her aunt and legal guardian, Jacqueline Hunter, is on the line right now, along with Amy Esler, a psychologist with M Health Fairview who oversees care for patients with autism at the Masonic Institute for the Developing Brain. By the way, we should also note that M Health Fairview is a funder of MPR News.

Jackie and Amy, thanks for joining us.

JACQUELINE HUNTER: You're welcome. Thank you.

AMY ESLER: My pleasure. Thank you.

CATHY WURZER: Jacqueline, can you paint a picture of your niece for us? Tell us a little bit about her.

JACQUELINE HUNTER: She's a beautiful girl. She's very smart. It's just that sometimes she acts out. And it got so bad that I had no other choice but to send her to the hospital to get help because I've been trying to get help to come into my house for the longest. So I just started sending her to the hospital.

CATHY WURZER: So she acts out, gets aggressive-- anything that triggers that at all?

JACQUELINE HUNTER: She likes going-- she thinks she's supposed to go to the grocery store every day. She likes Target, Cub, Walmart. And I'm a single parent. And sometimes you can't go to the grocery store every day because you don't have the money. And when I tell her, no, we're going to go Friday, that triggered her. And she started hitting herself, hitting herself against the wall, and just bamming on stuff to break stuff, and that would trigger it.

CATHY WURZER: And she's hard to control?

JACQUELINE HUNTER: Yes. So it was very hard for me because I was working third shift, and I couldn't-- I wasn't getting sleep at home because I would have to sleep with one eye open, one eye closed. I wouldn't sleep in my bedroom because I have to watch the front door, watch the sliding door. So it was very hard for me. And I was very, very stressed out. So I had to do what I had to do to keep myself safe and to keep her safe.

CATHY WURZER: And--

JACQUELINE HUNTER: I didn't want to. Go ahead.

CATHY WURZER: I'm sorry. I didn't mean to interrupt you. And it's hard to find care at home, right? I mean, we've done that story so many times in the past, that finding home health care aides is pretty difficult. And that was the same story for you too?

JACQUELINE HUNTER: Yeah, it's hard. But she's in a group home right now. But she'll be coming home in a couple of weeks because I'm taking a leave from my job for three months, and I just want to work with her without trying to sleep, go to work, do this. I want to bring her home because right now I'm not happy with her being in the group home.

And I feel real bad. I feel-- I'm disappointed in myself because I don't want her to think I gave up on her. I never would give up on her. So I'm bringing her home, and I'm going to work with her. I'm going to sign her up at the Y so she can learn how to swim because she loves water. And that's my plan to get her home and out of that group home.

CATHY WURZER: Amy, I'm going to get to you in just a minute. Just a quick question here, Jackie. So you were trying to get her some help. And the ER looked like just the best option, right?

JACQUELINE HUNTER: Yeah, because they have the right medicine and stuff to control her. The medicine I was giving her, it wasn't doing no justice for her. It wasn't calming her down or no justice at all. So I understand how people would drop their kids off at the hospital to get that help.

But I'm one of the person-- because my mom had 21 kids, and she never gave up on none of us, and she took care of us by herself. So I'm one of the ones that I would call the hospital three times a day to check on my child. I did not just drop her off and just said, I'm going to forget about her. No, I'm not like-- no, mm-mm.

CATHY WURZER: It sounds like this is a really difficult situation. Amy, hospitals and families have been talking about the mental health of young folks for a few years now. And as you know, the pandemic only worsened the situation. And it appears that kids with autism, like Jackie's niece, face even bigger challenges in a system that works. In a system that works, where should these kids be?

AMY ESLER: Right. Yeah, we have many important gaps in the continuum of services to support autistic children and children with other developmental disabilities. Kids like Jackie's daughter, Tyana, didn't get help along the way that might have prevented the need to go to the ER. We have long wait lists at each stop in the continuum for autism diagnosis, year-long wait for early intensive interventions. We have few psychologists and psychiatrists who specialize in autism across the lifespan. So difficulties with challenging behaviors often go untreated until the situation is untenable.

A good system would have adequate supports in place at all those steps on the continuum so we never get to this point. But once we get to that unsafe level of behavior, there's really nothing to help. And our work with autistic social borders, in particular, has really shown that having autism, intellectual disability, and aggression is the perfect mix of having no available service options. And even with everyone working together effectively to try to transition a child out of the ER, we don't have places to transition them into. And so we can't just create something out of thin air.

CATHY WURZER: What are the challenges of having these kids in the ER-- living in the ER for days or weeks at a time?

AMY ESLER: Yeah. It's a hard situation. I want to emphasize-- and I worked with Jackie while Tyana was there-- everyone is doing their best with the resources that they have. The providers and staff who work with kids do their very best to reduce harm. And we were able to do some innovative things to provide some supports. But the ER isn't a place where consistent supports can be given.

It's not a therapeutic environment. You get medication to help control your behaviors, but you don't get anything that might help you get over whatever the acute situation was that got you there. And it's often a chaotic environment. It's loud. It's unpredictable. It's both overstimulating and really under stimulating and unstructured. So most of the kids we see deteriorate while they're boarding there. And then it's even harder to find them care in the community.

CATHY WURZER: And, Jackie, how did your daughter do? I mean, as Amy just said, an ER for anybody is just a terribly chaotic, confusing place. How did she do?

JACQUELINE HUNTER: It was hard. It was hard for her. I would try to bring her home to keep her at home. But it's like I said, she would go off. I was driving from the store, and she just went off on me and my sister. And I attack her, and I'm trying to stop her from attacking her and attacking me while I'm driving. I almost ran into cars, almost ran into this. So it was very hard for me to see her go through that. And I figure there's got to be something out there that to help these kids because it's hard on the parents. It's really hard.

CATHY WURZER: Oh, gosh. I can only imagine. Amy, I know you've got this program that's trying to make things a little bit better by getting more services for kids with autism into ERs. Is that right?

AMY ESLER: Yeah, we had some funding from the University of Minnesota to develop what we called an autism hospital tool kit. And it was really resources, strategies, and materials to support autistic patients boarding in the emergency department. I think what we are able to do is not adequate. I mean, we really need to focus our resources on getting kids out of the ER. But we try to work with the staff who are working with the kids every day on how to best communicate with them, how to understand their communication needs and their sensory needs, how to add some structure to their day, and ways to reduce and respond to challenging behaviors.

A lot of our work, though, also involved working closely with social work supports in the ER to coordinate with the county to try to transition kids out and identify places for them to go. But there's just such a lack of services in Minnesota and inadequate funding for people to create these services that it's easy to get stuck.

CATHY WURZER: Now, Jackie, you said that your daughter is in a group home right now. And that doesn't seem like that is exactly the right place where she should be.

JACQUELINE HUNTER: No, it's not.

CATHY WURZER: As you bring her home, what are your biggest worries right now?

JACQUELINE HUNTER: Well, when I bring her home, like I said, I'm taking a leave from my job because I'm going to be home with her. So I want to work one on one with her and to get the right medicine in her to calm her down because it's got to be something better out there. It's got to be better because Tyana is not a person that-- she doesn't talk. She says little words. But if she goes out there and gets lost, she can't say call this person, or I'm lost. She just will be walking around.

So instead of me letting her stay out there and keep getting away, and then I would feel bad if something really happened to her, I'm bringing her home. I'm going to work with my baby. And I've got on my knees, and I prayed to God, and God gave me the strength, and God told me to bring her home. And that's what I'm going to do. So this time around, it's going to be totally different. I'm bringing my child home, and I'm going to work with her, and I'm going to get her right.

CATHY WURZER: Jackie, we all wish you well. Thanks for telling your story. And good luck. Best of luck.

JACQUELINE HUNTER: Yes. Thank you.

CATHY WURZER: And, Amy, thank you for what you're doing too. We appreciate your time.

AMY ESLER: Thank you so much. Reach out to us, Jackie. We can help you too.

JACQUELINE HUNTER: All right. No problem. Thank you.

CATHY WURZER: Jackie Hunter is a caregiver who lives in East Saint Paul. Amy Esler is a professor at the University of Minnesota Medical school and a psychologist with M Health Fairview who specializes in autism. You can read the Sahan Journal story it's at sahanjournal.com. We'll also have a link to the story on our website-- that's at mprnews.org.