Reporter Julia Merola joins “Beyond the Headlines” to discuss her article ‘Afraid to Die’: Parents of Disabled Adults Struggle to Find Housing. The article profiles three families who are concerned they will not be able to provide supportive housing for their adult children with disabilities before the parents pass away.
Merola shares how a previous article built trust and connections in the disability community that led directly to this article, how she worked to draw readers into an issue they may not have personal experience with, and why she thinks a profile like this has strong news worthiness even though it’s not breaking news.
The podcast is hosted by Director of Community Engagement David Stradley.
This transcript has been edited for length and clarity.
I’d like to start with our “Hey, mom” question. Imagine you’re talking to your mom and literally start with, “Hey mom, I wrote this article about…” and then tell her briefly what’s interesting about this story.
So I would say, “Hey mom, I wrote this article about families with adult children who have intellectual and developmental disabilities in Delaware, and those families are really struggling with finding housing options for their children. And you know, it’s interesting to hear about something that I never knew about before talking to these families.”
So you never knew about this issue. How did it become a Spotlight Delaware story?
Back in October we had written a story about the Neyers family and this mom whose son has autism, and he wasn’t getting the resources he needed in school. The family was trying to find a way to get therapy outside of school.
And after the story was published, one of our CEO’s friends reached out and said that there’s also this struggle with finding housing for adults with intellectual developmental disabilities. It was something that I hadn’t really thought about before and I hadn’t really seen being reported on too much before. So it was something that I wanted to dive into.
So in some ways this was a case of one careful, respectfully reported article leading to trust in a community and opening up an avenue for another article.
Yes.
How were you then connected to the families that do appear in this article?
Back to how I was saying our CEO’s friend reached out. After she reached out, I followed up on that tip and I was able to get connected to a few families who are involved in an organization called the A-Team Delaware and that organization advocates for accessible housing for adults with intellectual developmental disabilities.
So I was just able to speak to a few families in that community and hear their stories.
We don’t typically do this on the podcast, but I thought the way you began this article was a really effective way to bring the reader into it. I’d like to actually ask you to read out loud the first several paragraphs of the story so our listeners can hear it in your voice. Would you mind doing that?
For sure.
‘A good day for Ramara Shackelford is one when her 21-year-old son makes it through his daily routine without prompting.
On those days, her adult son Marcellus “Dre” Shackelford will wake up and get dressed by his second alarm. Then, he will make his breakfast, take his medication, brush his teeth, and wash his face before going to his day program. Many of those steps will be done independently, with minimal prompting from his mother.
Shackelford says that happens about twice a month.
Most days, every step of Dre’s routine is rushed. He lies in bed past his alarms. Then, with help from his mom, he races out to catch his morning bus to a program hosted by the Red Clay Consolidated School District that serves students with intellectual and developmental disabilities in kindergarten through age 22.
On those days, Dre still makes it to his classes at the Meadowood Program, where he works on his social skills, such as conversation starters, and learns to do tasks, such as washing dishes. Shackelford’s goal is for her son to ultimately have more independence as an adult.
“I want him to be able to go to a retail shop and buy his deodorant,” she said, “just things that regular people do.”
Soon, Dre will be too old for the Meadowood Program, so Shackelford has begun to look for housing where her son can live independently. In doing so, she has encountered a system of adult living situations that can be overwhelming in their complexity. She can’t imagine what it would be like for some who have to do it on his own.’
Thank you, Julia. I know when I read that, I was immediately brought into the situation, particularly that third sentence of “this happens about twice a month” – the good morning routine. Why and how did you decide to start the article in this way?
Whenever I’m doing a story that’s focused more on families or students or teachers, I like to start it in a way that shows the reader the everyday life of whoever I’m talking about.
So for this particular article, I wanted to start the draft by just showing this is what the routine looks like. This is the reality of that routine. And now that routine could be totally changed in the future. If Dre goes through this housing process and he no longer lives with his parents, this routine that they’ve established could easily be changed in the next few years. But this is what it looks like right now.
As I’ve been learning about the journalism world, I’ve learned that this kind of open is called a narrative lead versus a hard news lead. Can you talk about the differences between those two approaches and, again, why you thought a narrative lead was the best way to start this article?
The hard news lead is usually something that’s more straight to the point, I’ll say. Like, if there’s a particular statistic about, you know, this is how many Delawareans have intellectual and developmental disabilities and they’re also struggling with finding housing.
I think that sometimes that works. I just thought for this story, it was more impactful to show the reader the daily life of this woman who actually has a son who has an intellectual and developmental disability, and she’s actually going through the housing process for her son and contemplating what comes next.
I just think that it was a more impactful lead than a statistic would’ve been.
Can you take us through a little bit more of your reporting process on this article? I have to imagine it was a delicate one as you tried to understand and capture the complexities of the lives of these families.
As someone who is not part of this space, it’s a lot of listening and making sure that you’re trying to understand someone’s experience as much as possible so that you’re accurately portraying it – doing these stories as articulately and as clearly as you can
At the same time, you know, one of these families – she’s a mother to three daughters with intellectual developmental disabilities. So you want to respect her space. In general, having three kids and trying to schedule an interview with a parent is tough. But you want to respect their space and build that trust over time so that you’re able to get that story out there.
Was your first step phone call interviews or did you just show up at people’s homes and get to know them that way?
No. I personally wouldn’t have that be my first step, just because I think that sometimes that can put a lot of pressure on a family to change their whole day-to-day routine. Especially if a routine is really important to a family like the Shacklefords.
I did a mix of Zoom and phone call interviews. Then with the Shacklefords, after that Zoom interview, I asked to see if she was comfortable with me coming in one day and taking a few photos of her and her family. And she said yes.
I came in and I made sure that her son Dre was comfortable with me being there. I didn’t rush him or anything like that because he was still going through his daily routine when I got there.
I waited to see when he was ready for me to take those photos. In the meantime, I took photos of his schedules and his breakfast that was laid out for him.
For you personally, just being there with the Shacklefords in their home, did you gain additional insights being there in person versus the phone call or the zoom that you had with them?
I don’t know if I would say I got any additional insights. I think what I would say is I kind of got a basic understanding of who Dre is and what his routine looks like based on the Zoom call with his mom. He did make a very short, special guest appearance on that Zoom call, but was not interested in speaking with me. So that was very short.
But I think that when I went to their home, it was really just making sure that he was comfortable and I wasn’t rushing him or pressuring him or anything like that.
I remember he came downstairs from his room and I think he was getting his breakfast together. Then he just sat on the couch with his breakfast. His TV was on and I took pictures right before he started eating. I told him it would be quick and I tried to do it as quickly and painlessly as possible.
One of our editors says that the aim of news reporting is to make the unknown known. He’ll frequently ask, “What’s the news here?” In other words, what is the unknown? Do you see this article fitting into that model for assessing the newsworthiness of the topic? And if not, why is this a Spotlight Delaware news article?
I will just say I think that anyone who has ever taken a journalism course in high school or college, when you hear “newsworthiness” it’s kind of this buzzword to mean something that just happened this past week or within the month.
Obviously this is not something that happened last week. This is an issue that parents have been experiencing for multiple years. But at the same time, going back to “making the unknown known”, I think that’s what this article does.
One of our missions at Spotlight Delaware is to empower Delawareans. And I just felt this was a story that I hadn’t really heard too much about before and it was something that I felt should be talked about. If there’s programs out there that parents are feeling there’s issues with accessing those programs, I think that needs to be talked about.
In reading your article, there seemed to be a disconnect between the state – in this case Jody Roberts who is the director of Delaware Health and Social Services Division of Developmental Disability Services – and the families. You quote Roberts articulating these very clear processes that the state has for assessing housing needs of adults with disabilities and assisting families with finding housing.
But each of the families identified gaps in service they experienced and in different ways express that the process was not clear for them. Did your reporting identify where that disconnect happens, and is there any solution for trying to clear up that disconnect?
During the reporting process, I spoke to families and then I spoke to the state. I think that I realized after speaking with the state, that sometimes there’s a difference in the language that’s being used. Families talk to me about this idea of there being a waiting list, versus the state who said there isn’t a waiting list but they understand where that confusion comes from.
And so I think that there’s information out there. Maybe it’s not always the most accessible or it’s not the most understandable for a family who either has multiple children and one of those children has intellectual and developmental disabilities or, you know, they have multiple children who all have intellectual and developmental disabilities.
Then at the same time, there was the conversation about Delaware is also being impacted by a national shortage of direct support professionals. And those are the people who work with adults with disabilities. That shortage is something that is on parents’ minds.
It’s a complex issue that’s not just affecting Delaware. So I thought that that was a really interesting concern of parents as well.
You got a lot of feedback once this article was published. We have an internal messaging system at Spotlight Delaware, and we have a whole channel in there that’s called the Impact Channel. In less than an hour after the newsletter was sent out that this article was in, you had already filled that channel with three or four or five different people who had reached out to you and shared feedback on this story.
Was there any of the feedback that you received that was particularly meaningful to you?
I won’t single out any particular message, but I think there was this cumulative message that so many people have family members who have intellectual and developmental disabilities. Even though those family members don’t always live in Delaware, their experiences with finding residential options and looking at what housing is available, those experiences are all really similar.
We had a lot of people telling me that they were glad that Spotlight Delaware was putting these stories, these experiences out there, because it’s not something that people typically think about unless you’re part of that space where you’re advocating for people who have disabilities and you’re advocating on the housing side as well.
It was nice to see that. Although this story resonated with a lot of people – which isn’t something that you would maybe want to hear, you would probably want to hear more success stories – they still felt like there was hope in the sense that we were putting that story out there and getting eyes on an issue.
That’s great. Well, thank you, Julia, for educating yourself on this issue that was unknown to you and making it known to a lot more of us.
Yes, of course.
