Teaching Infants, Toddlers, and Families Who Need Us Most
Danny Torres in conversation With Leslie Fox, Director of Early Childhood Mental Health, Development, and Disabilities at WestEd
Dr. Leslie Fox:
One of the strengths of early intervention is family empowerment. We value that parents are driving the car and our job is to support them and their priorities, to help them understand their options, help them understand the different benefits of different approaches and strategies to address specific skills, as well as what the programs may be that they can cobble together to have a unique individualized support system.
Danny Torres:
Welcome to Leading Voices, a podcast brought to you by WestEd, a national nonpartisan research, development, and service agency. This podcast highlights WestEd’s leading voices, shaping innovations and applying rigorous research in ways that help reduce opportunity gaps and build communities where all can thrive. I’m Danny Torres. I’ll be your host.
According to enrollment data submitted by states in early 2025, approximately 540,000 infants and toddlers received early intervention services under the Individuals with Disabilities Education Act, or IDEA Part C, during fiscal year 2023. Nationally, that represents about 7% of children under the age of three, but enrollment data tells only part of the story. The 2023 United States Government Accountability Office Report found that only 53% of children referred to early intervention services were ultimately enrolled. And a 2021 report by EdTrust indicated that fewer than one in four eligible children actually received services. In this episode, we’re exploring the Collective Impact Model for Child Find under IDEA Part C, also known as CIM-C.
Led by WestEd, CIM-C is a research and technical assistance initiative designed to strengthen referral pathways by connecting community partners, expanding screening and referral training, and enhancing family engagement. Joining us today is Dr. Leslie Fox, Director of Early Childhood Mental Health, Development and Disabilities at WestEd, and principal investigator of the CIM-C project. Leslie is a leader in shaping early childhood policy and programs at the national, state, and local levels. Her work focuses on creating positive outcomes for young children and their families, especially with those with infants, toddlers, and preschoolers who have developmental delays or disabilities. Leslie, it’s great to have you on the program today.
Dr. Leslie Fox:
It’s a pleasure to be here. Thank you, Danny.
Danny Torres:
All right. So for listeners who may not know, can you tell us about the Collective Impact Model for IDEA Part C Child Find? What is it and what are the challenges you’re addressing in this work?
Dr. Leslie Fox:
Sure. So the Collective Impact Model for IDEA Part C Child Find, or CIM-C, is a five-year model demonstration project, and it’s intended to improve the early identification of infants and toddlers with potential developmental delays or disabilities and increase appropriate referrals to early intervention, or EI, otherwise known as IDEA Part C.
So a model demonstration project, these are funded by the US Department of Education Office of Special Education Programs, and they’re intended to be applied research and technical assistance investments to address the problem of practice. In this particular case, OSEP noted that the national trend on referrals to early interventions seemed to be stagnating, if not decreasing in some states. So they funded three investments to take a look at what’s going on and what could we do about it.
The model demonstration projects are saying, “We’ve taken an approach and we’re putting that approach into action. We’re going to implement it across different sites.” In the case of the CIM-C project, these sites are in Alabama, Montana, including the Flathead Reservation, the Pacific Island of Guam, and New Mexico. So we’re putting our model in practice. We’re implementing it across these different states at different points in time. We’re implementing our TA activities, or technical assistance activities, and we’re making subtle changes across each site as we learn what’s working and what’s not working. But the goal of a model demonstration project is to find something that’s a replicable model to address the problem of practice. And in this case, it’s why aren’t families getting connected to early intervention? Or if they are, why aren’t they enrolling in intervention if eligible?
So for our project, the team collaborates with state and local leaders to promote high quality screening practices in order to identify in a timely manner and connect families to services, including early intervention, or EI, but not only those services. So when we talk about identification and referrals, we’re talking about something known as Child Find, that’s the lingo of the field.
So for our particular project, there are three critical components that are implemented across all four sites at different points in time. The first is the establishment of a cross-sector local Child Find team. These are a group of individuals at each site that represent not only early intervention, but community partners we rely on who often first identify concerns, talk with families about developmental skills and milestones, and make referrals to the early intervention program.
So these partners include the medical communities like pediatricians and neonatal intensive care unit staff, or NICU staff, childcare providers, our Head Start and Early Head Start colleagues, and in one site, staff from Child Protective Services. So these partners at each site identify mutual benefits or outcomes for the activities promoted by the team and developed by the team and they talk about the collection analysis and use of data to inform decision making and customization of resources that are meaningful for the families they serve in those communities.
So it’s really about coming together around a joint vision for what screening practices look like by each of those programs and providers, how to do them better, and how to tailor some of the language and some of the resources to reflect the different families and their different perspectives and experiences in those communities.
A second element for the project is ongoing engagement with families. Through interviews, surveys, and focus groups, we gather insights about their experiences of what’s going well, what needs to be done differently or better, and how we can improve resources and the way information is presented to families as they’re talking about potential concerns and navigating these different systems in their child’s youngest years.
The third element is a series of cross-sector professional developments, learning communities, and communities of practice for early childhood providers representing all those different programs. We provide professional development on different screening tools, how to administer them, when to use them, and what information you get from them that can help ground conversations with families about child development, about potential concerns, as well as strengths, and which services, including early intervention, families could access if they want to take a closer look at certain developmental skills and abilities.
Danny Torres:
Great. I’m going to go dive deeper into the intervention screening and referral systems.
Dr. Leslie Fox:
Sure.
Danny Torres:
So what have you learned about the gaps in early intervention screening and referral systems in rural communities?
Dr. Leslie Fox:
It’s really interesting, and this is going to sound counterintuitive a little bit because these are statewide systems. These services are available by law in every ZIP code, every community across every state. So they’re required. There, in theory, should not be any service gaps. They’re required to be available in all areas.
The challenge is, for some states, you have standard resources that have been developed by the state office and they are very regimented in terms of content, like which questions you ask, when you ask them, what data you’re supposed to be collecting, timelines for entering that data into the system, next steps. And that’s because there are legal requirements tied to gathering and collecting information, making decisions about eligibility, implementing services within 45 days of referral.
So it can become a little bureaucratic. And what it doesn’t allow is for local programs and providers to really think about how could we be talking about these very critical steps of a process in a way that’s relatable to the families we work with? How do we tailor conversations about what are basically legal processes so that families really do understand their rights and their decision points and what it means to enroll in the program and what it means to give permission to have services provided, what it means to write goals.
And so I think what we found is the states that have really robust systems and processes in place sometimes have quelched a little bit the capacity of local programs to really think there’s something unique about our community and we can still go through all of these steps and check all these boxes, but tailor how we engage with families and how we engage with our referring partners in a way that strengthens coordination rather than putting up bureaucratic processes that sometimes threaten it.
Danny Torres:
So it’s about tailoring approaches to the specific needs of the community or groups within the community?
Dr. Leslie Fox:
Exactly, without losing the important key elements that have to be in place. For example, when we talk about tailoring the process, in Montana, we’ve had the privilege of getting to know some of the providers on the Flathead Reservation and that represent the Salish and Kootenai tribes.
And when we were having some of our conversations with some of the early childhood programs that are based on the reservation there, they were saying, “It’s really, really difficult for us to get into homes.” And they do home visiting too in some of these programs. And early intervention is all about natural environments and serving children in their homes or in their childcare or other settings where peers without delays or disabilities might be also present, so it’s wherever the family takes their child.
And they were saying it was really difficult to get into homes. And I was like, “Well, that’s kind of interesting. So what do you say?” And they were like, “Well, we offer to meet someplace else. We meet at a park, we meet at the grocery store, they come into our office.” And if you’ve been in early childhood, early childhood intervention long enough, your back starts to arch a little bit when you hear that. It’s like, “Oh, no, no, we come to you. We come to you. That’s a core principle of early intervention.”
And yet, is it really necessary to have the paperwork meetings face-to-face in the home? And the answer is no. You can meet elsewhere. If it’s off-putting to have a provider I don’t know coming into my home to talk about my child and their skills and abilities and possible eligibility for special education services for infants and toddlers, then maybe I just have the conversation someplace where the family feels comfortable.
But in early intervention, we tend to go, “We’ll come to you. We’ll come to your home.” And we think that’s a selling point because for most it has been. So having the capacity and the confidence to say, “Some of these things are going to take place in a different way than what we would usually do, but we’re still meeting the heart of the activity,” which is to explain the program to families, gather information, and initiate the process.
Danny Torres:
So you’re working across multiple settings and communities. From the island territory of Guam and to Native American communities in Montana and New Mexico, what have you learned about the unique barriers families in these areas faced in engaging with early intervention services in particular and with providers? And how do we build systems that work for families in remote areas?
Dr. Leslie Fox:
With one of our sites, we have the opportunity to work with military families. So military families are highly mobile. They move every two to three years. They are primarily young. Active duty service members are usually under the age of 30, if not under 25, depending on the branch, like for instance, Marines. US Marines are usually very, very young. They have young children, so they’re young parents with young children, and they often have more than two.
Now, over the course of over a three-year period, a military family could move twice in the three years that a child has been born. So it’s been really interesting and a little heart-wrenching to have some of our interviews with military families talk about, “Well, our baby was born in this state and was a preemie and in the NICU, but we were getting ready to move to a second state. So the early intervention program didn’t find them eligible and we didn’t leave with what’s known as an Individualized Family Service Plan, which is a legal document.” It’s similar to the individualized education program that you would get in school age services, and it’s legal, which means your receiving program has to pick it up until they can demonstrate that changes need to be made or you don’t meet the eligibility for that particular service system.
So they left without an IFSP, went to their next state, and they lived on the military post or community base, so the military installation. Which has its own early intervention program known as Educational Developmental And Intervention Services, EDIS, but that’s available on all military installations. And if you live on the installation and they have an EDIS program, well, you could receive early intervention services through the EDIS program. If you live outside the gates of the military installation, then the state is responsible for early intervention services.
So the family didn’t quite know who to contact because they had moved, they were on the military installation, they do connect with their EDIS providers, but then they’re getting ready to move off the military installation. So then it has to transition to the state that the installation is located in. And then there’s some discussion about medical records.
You can see right now, you can see there’s just a lot of, “Well, if you live here and if you live there and when you move there and when you get back.” They got ready to move to their third state before that child’s third birthday and they still were not receiving consistent early intervention services and their child was eligible. So that’s a lot of challenges for highly mobile families. And then there’s also the trust of privacy and confidentiality because there are perceptions of that within military community that there’s really no such thing as privacy.
A different barrier might be in some of our cultures as perception of disability. In some tribal communities, for example, disability is just the natural part of the human condition. They’re not worried the way maybe other communities might be about a potential delay or even physical disability or something like that. It’s just part of being a human being.
And so it’s a different conversation to say, “I respect your values and beliefs. And if you want services, we can do something now that might mitigate the implications of this disability or delay for later learning or educational outcomes.” These are choices families get to make as parents. And so having that conversation with some of our tribal families who maybe aren’t worried about what it means to have a delay or disability, and our job isn’t to make them worry, but it is to let them know they have supports if they want to pursue them.
On the flip side, there’s still a lot of shame and self-reflection and worry and blame that parents put on themselves when their child may have a delay or disability. And so they may not be quite at the place to seek services yet. And how we talk to them about what it means to have a different type of delay, what the possible disability may be or diagnosis may be, can either go well and support them in thinking about how to access resources and services, or we could basically become our own barrier because we’re insensitive in how we’re having the conversation.
Anytime you have systems that rely on different funding sources, money can become an issue. Some programs, some hospitals and medical communities incentivize their providers to first refer in-house to their occupational speech, physical therapy programs, before they refer to the early intervention program because you can charge to Medicaid or insurance or patients could pay out of pocket for those services. And that’s a reality too.
Danny Torres:
So it sounds like there are four key things. So it’s a cultural challenge, there’s a social challenge, and there’s a bureaucratic and funding challenge.
Dr. Leslie Fox:
Exactly. And it can be any of those mixed together too. But this is where it’s really great to work in local communities because they’re very candid about what’s happening. They want to do well by children and families. And so whatever freedom they have to make decisions about how they can tease through some of these challenges is so amazing to see in action.
And we did see that in action. We saw our local Child Find teams when we brought these different representatives from different programs across early childhood sectors come together to really prioritize and triage strategies and land on some agreed upon steps.
Danny Torres:
So I understand that as part of this program, you conducted some interviews with families. How have those interviews informed your work, and what strategies can providers implement to engage families, help them understand their rights, and empower them to advocate for their children’s needs across different service systems?
Dr. Leslie Fox:
Oh, what a great question. I will say as a general rule in Part C Early Intervention, we do that well. Everything is centered around families, explaining procedural safeguards, understanding their rights, checking in with them on a regular basis. We have family outcomes that are a part of the service plan in addition to child outcomes. And actually, our Head Start and Early Head Start colleagues do that too. They talk about family outcomes as a key component of work that they do.
I think what can be really challenging is, once again, going back to when I was a direct service provider, I worked in early intervention, the better part of 20 years, and I had sort of my standard way of saying stuff. I was good at it. I could get through those family rights and walk them through in five minutes flat and slide that piece of paper over for them to sign that they’ve gotten a copy of their rights.
And you think about what it’s like when you go to the dentist or you go to the doctor and they’re just putting all this stuff in front of you and you just start to sign, but that’s not how you should explain family rights. And I got better as a result of thinking about, “Okay, if I were on the receiving end of this for the first time, how do I need to communicate with not just that these are your rights and these are the safeguards, but what does that mean to you, and why do you need to know this?”
And so it has been really important. So for instance, our work in Guam, we were talking a lot about how they rely on imagery in a lot of their culture, the Chamorro culture, imagery. And so they had already developed this amazing form that uses images relevant to the culture and the community on Guam and their history to help communicate key principles and align that with the steps and the process families were going through and which procedural safeguards were relevant to this particular process.
Similarly, when we were in Montana with the Flathead Reservation, very oral cultures. And yet what we tend to do is slide a bunch of paper across people or give them a website link. So just really recognizing that communication can’t fall to the backside of administration. We will get through these processes, we will get through these steps, but how we communicate with families sets the tone for that engagement throughout their enrollment in our services.
Every state has to have a definition of what it means to have a developmental delay. And that’s based on you administer some assessments, you get a score, does the score meet the eligibility criteria? If so, yes. If not, then they get connected to other sources of information or support.
And then there’s what’s known as established conditions. So every state has a list of, “If you have this diagnosis, if you have this established condition, you’re automatically eligible for early intervention if you want to pursue those services.” And I think for pretty much every state, Down syndrome, or Trisomy 21, which is a genetic condition, is an automatic qualifier for early intervention.
During one of our interviews, this mom was talking about her experience in getting connected to early intervention. And she starts with, “Well, I was told while I was pregnant that my baby had Trisomy 21.” And I was like, “Okay.” So she moves forward, has her baby. And of course, her baby has Trisomy 21, and it’s pretty notable.
Some children who have Down syndrome, the features aren’t as notable at birth because there’s such variation in how children grow and develop, but she got ready to get discharged. Her baby was in the NICU, the Neonatal Intensive Care Unit, for a couple of days for other factors. They were doing some of the standard testing that you do when you know a child has Trisomy 21, like heart rate mummers. They look for heart rate, heart issues, and ophthalmological issues, and things like that.
So the neonatal intensive care unit physicians knew that this child had Trisomy 21. They discharged her home. She’s home and she’s there for about four weeks. She goes in for that first post-delivery check-in with her pediatrician. And she’s got these real concerns because her baby is having a difficult time feeding, not something unusual for children who has Trisomy 21. It deals with motor tone and coordination of the tongue and the muscles of the mouth.
And she mentions this and was basically told, “Well, just keep trying.” And she goes home. And so she starts Googling and YouTubing videos to try to get information about how to feed her baby who has Trisomy 21, trying to figure out how to do positioning and support on her own. But to talk about missed opportunities. Her OB-GYN could have talked to her about early intervention while she was still pregnant. The NICU could have talked to her about early intervention when she got discharged or her baby was discharged. Her pediatrician could have talked about early intervention at any point in time after that baby was discharged from the hospital. And certainly when the question was brought up at that first postnatal visit.
And yet her baby was 10 months old before someone happened to connect her to early intervention. And that person happened to be a curriculum specialist at an Early Head Start program who met her at the gas station and was chatting about babies and life while they’re getting gas. So just the fact that this is a warm, kind person who struck up a conversation with a mom who had her baby in the car with her while she’s getting gas, that should not be the way a family is connected to early intervention.
And I just think it’s an example of how any one of those could have been a point of referral, but every one of those should have been a point. “Do you know about early intervention? Do you know that they can help provide some support from the moment you leave the hospital? They can come visit you and your baby in the hospital. You don’t have to pursue services if you don’t want them, but if you do, they’ll be automatically eligible.”
Danny Torres:
Yeah. I mean, it’s a great example of the need for aligning these systems.
Dr. Leslie Fox:
Absolutely. And not making assumptions that the other person made the connection, that the family hasn’t been connected to EI. They may have. They may have been referred and they chose not to pursue services that time, but that doesn’t mean you don’t talk to them about it again. They may choose not to decline it again. Parents have the right to decide when they want to pursue any kind of services, but the provider has the responsibility of bringing it up appropriately during different interactions.
Danny Torres:
So what does it take to help professionals across early childhood systems like Early Head Start, Child Protective Services, and pediatrics feel confident about having developmental conversations with families, and then be prepared to serve as partners in the early intervention process?
Dr. Leslie Fox:
It really takes a lot of professional development. It really does. And humility. Developmental screenings are not predictive. Developmental screenings aren’t diagnostic, but they are a key point in flagging potential concerns and helping families know which resources they might access.
A key thing I think is to understand what is your role in how you work with families? So if you’re a pediatrician or a family practice doctor and you mostly see children for well-baby checkups and sick visits, well, then how you go about gathering developmental information may be different than if you’re a childcare or early caring learning provider who sees a child eight hours a day, 10 hours a day, five days a week. You have the luxury of gathering more information in that second scenario.
So do it and gather information and use screening tools and resources that allow you to capture information and have clear decision points. And if the score is at this point or above or lower, depending on the tool, then refer them to early intervention, but talk to them about why you’re making the referral. Talk to them about what that the screening is not making a diagnosis. “My job is not to tell you that your child has a speech delay or that your child’s motor skills are somehow developing atypically, but my job is to share with you that there is a potential concern, and here are the resources you can access for a better understanding of what’s going on.”
And that includes early intervention, but won’t only be EI. So understanding which tools to select that are relevant and appropriate to the work and relationships they have to families is important. And usually, your early intervention program can help you think that through. Your EI program can also really help you think through when to make a referral. So working with the local early intervention program to understand those nuances of what happens here helps providers feel more comfortable about what to say to families.
For this project, we developed talking points. We had the different programs come together and say, “What do you want me to say about your program? How do you want me to explain your program to others?” And then we had families give us examples of words and language that had been used that really helped connect them to services or became very off-putting and were barriers to connect them to services. So having families weigh in on what worked and what didn’t work. It sounds so elementary, but we don’t do it a lot.
And as new providers step into their roles or as people shift roles, having them be mentored or having them shadow someone who’s having these conversations with families is really important because there’s a lot of emotion that comes in. And I’m not saying that being told having a delay or disability needs to be the end of the world, but I’m saying it’s emotional. There’s no such thing as a mild delay to a parent.
And so sometimes the words we use are meant to kind of soften information when really we need to take a look at what are the assumptions we’re making about what they’re hearing and what they need to hear. So coming up with talking points, prepping what you need to emphasize, ensuring that strengths are also noted. And frankly first noted, because we’ve used strengths to address challenges or potential delays. We use interests to build out opportunities to practice skills that maybe aren’t coming as easily.
So talking with families about strengths is really critical. And this takes practice, it takes understanding the purpose of your developmental screening tool, what it does and does not tell you in terms of the kind of information you’re gathering, and what you do with that information in terms of referrals or tracking and monitoring and follow-up.
And for our project, we’ve developed a cross-sector screening and referral cadre professional learning community approach. We present a small amount of professional development and training on three different developmental screening tools. We talk when they’re appropriate to be used and by whom, and how you might use that information to ground a conversation with families about next steps, what to watch, what to try at home, when to screen again. Just what do you do with that information and how do you engage families in understanding why you’re even asking or talking about this in the first place? So talking with them about the screening process.
Danny Torres:
What are the long-term implications when we fail to engage families effectively in the early intervention process? And what does it cost our communities and children with developmental delays and disabilities when we don’t get early intervention engagement right in those critical first three years?
Dr. Leslie Fox:
I think it’s such a missed opportunity when families aren’t engaged in EI, or early intervention, because one of the strengths of early intervention is family empowerment. We value that parents are driving the car, and our job is to support them and their priorities, to help them understand their options, help them understand the different benefits of different approaches and strategies to address specific skills, as well as what the programs may be that they can cobble together to have a unique individualized support system.
In early intervention, it really is about families. And I can say that families who’ve gone through early intervention and then their children end up transitioning to preschool services for children with delays or disabilities under IDEA as well, but it’s known as Part B preschool, they are better prepared to advocate for their children. They’re better prepared to have conversations with school-based providers who are wonderful providers and practitioners in their own right.
Each state has its own eligibility criteria, so it’s hard to say in mass that all EI programs are serving the same children who would meet the same eligibility criteria. But what we do know is for children who receive early intervention services, for some, they are less likely to need special education services once they turn three and move into that system. For others, they are more likely to be served in a special education system with their peers who don’t have delays or disabilities.
So in the least restrictive environment, in a regular universal pre-K program, as they move into kindergarten, into their regular kindergarten classrooms. And those are two really big implications right there. So one that you might not need services as you get older. And for another, the location and the intensity of the services needed is less scary to families and less costly to taxpayers.
Danny Torres:
Right. That’s so powerful. It’s not often talked about that some young children who receive services up to age three might not need the services later. And the benefit to that is just profound. So we’re coming to the end of our time. And I want to see if you have any last thoughts for our listeners before we part here.
Dr. Leslie Fox:
I just think it is so amazing what’s happening in local communities. We have great states and state leaders, but every community is really unique in its composition. The providers are unique in their skills and interests. The families that represent a different community bring in just all sorts of amazing insights into what makes us human and what it’s like to work with families is a humbling opportunity to get a glimpse of just how amazing we are.
But I think it’s just also really important that having meaningful conversations with families about their expectations related to development and about potential developmental concerns is a skill that has to be practiced and maintained. And unfortunately, we learn our strongest lessons when we do it poorly. So the opportunity to think about professional development across sectors for anyone, I call it the family business. If you’re in early childhood, if you work in a early childhood program, early childhood is a phase of life, not a specific program or project.
So get to know the others who work in your family business and talk about what you could learn from them about how to bring up a question or concern or how to respond to a question when a parent brings it to you. And which services have really proven to be helpful in your community, and which ones need some support and how we could get to them. Providers don’t naturally come to this skillset. They have to practice it, and it takes opportunity in joint professional development. I just really think that’s so critical, ongoing joint professional development.
Danny Torres:
Is there a place where our listeners can find your work online?
Dr. Leslie Fox:
There will be a online toolkit that will be a publicly available. We’ll have the link on the WestEd website when it’s ready to go public. We’re still in the process of refining and developing materials. And this will include templates, talking points, survey examples, ways that state and local programs can gather information, as well as examples of how states and local programs have addressed individualizing and tailoring some of that content for their communities and for the providers and the families and their communities. This will be an online learning management system. And so it’ll include videos, voiceover PowerPoints, written resources. And they’ll be available on the WestEd website once we get everything developed and up and running.
Danny Torres:
Sounds great. We’ll put a link to that too in the show notes.
Dr. Leslie Fox:
Fantastic.
Danny Torres:
So how can our listeners find you online?
Dr. Leslie Fox:
Absolutely. You can reach me at WestEd.org. There’s a contact sheet that can be filled that will go to my email, or you can email me directly at [email protected].
Danny Torres:
Thank you, Leslie, for being on the program, and thank you to all our listeners for joining us. You can find this and past episodes of the Leading Voices podcast online at wested.org/leadingvoicespodcast, or on Apple Podcasts, YouTube Music, Pandora, iHeart, and Spotify.
This podcast was brought to you by WestEd, a national nonpartisan research, development, and service agency. At WestEd, we believe that learning changes live. Every day, we partner with schools and communities across the country to improve outcomes for youth and adults of all ages.
Today’s episode focused on one really important facet of the work that we do at WestEd, and I encourage you to visit us online at wested.org to learn more. And special thanks to Sanjay Pardanani, our audio producer, and to Grace Westermann, our content manager for this episode. Thank you all very much for joining us. Until next time.