Asociarse con las familias para apoyar la inclusión: primera parte

(En inglés)

Partnering with Families to Support Inclusion: Part 1

Jennifer Fung: Hi, everybody. Good afternoon. Thank you for joining us wherever you're joining us from. Today is the first webinar in a two-part series focused on engaging families of children with disabilities. Hopefully, you're here to watch Partnering with Families to Support Inclusion part one. If this isn't the webinar you wanted to be on, just stay with us. We've got some great information today. Today, we're going to explore how Head Start program staff can use relationship-based practices to have initial and ongoing conversations with families about developmental concerns. 

Like I said to really, once that initial conversation has happened, if necessary, continue to engage families in ongoing conversations that are responsive and supportive of the family's priorities and questions and needs for support. We, today, will discuss potential reactions and responses that families might have when presented with a concern about their child's development. During this conversation about reactions and potential responses, we're going to talk about the concept of family readiness. We'll talk about what that means and what factors might influence a family's readiness. 

After that, we'll talk about the importance of having ongoing conversations with families. That's going to be a theme for today. During that section, we will hear a lot from families about the questions, concerns, and priorities that they had when a concern about development was first raised for their child. Then last, we are going to wrap up with some strategies and supports and resources that are just for you. That are for education staff who are supporting families during these initial and ongoing conversations. Thank you again for joining us. 

My name is Jen Fung, and I am the inclusion lead for the National Center on Early Childhood Development, Teaching and Learning or DTL, as we call it. I am your host of the Inclusion Webinar series. I'm thrilled to be joined today by two incredible colleagues and friends, Alexis and Lisa from the National Center on Parent, Family and Community Engagement. Alexis and Lisa, do you want to say hi and introduce yourselves?

Alexis Tarbin: Sure. As you said, my name is Alexis Tarbin, and I'm with the National Center on Parent Family Community Engagement. I'm a TNTA specialist with the center, and I live in Mississippi, if you would like to know. And Lisa.

Lisa Sommella: Hi. Good afternoon, everyone. My name is Lisa Sommella, and I'm also with the National Center on Parent Family Community Engagement. I'm a content specialist. I live in Charleston, South Carolina. I'm excited to be with each of you today for the next hour.

Jennifer: Thanks, Lisa, and Alexis. I didn't mention I am joining you from Seattle, Washington. It's lovely today. I can look out my window. We're joining you from different parts of the country, and we know that you all are joining us from across the country and territories as well. Thank you and welcome. 

Just a quick look at our objectives for today. Our objectives during the webinar are to identify strategies that staff can use, education staff, family support staff, can use to raise concerns and have supportive and responsive conversations with families about their child's development. We're going to explore potential responses and reactions to hearing a concern about development. And then we're really going to explore the concept of readiness. 

As I mentioned earlier, this concept may be new to some folks. We're really excited to explore family readiness in this context of acting on developmental concerns. Including really taking a look at what factors, what events, what characteristics might impact a family's readiness to act on concern. We are almost ready to get started, but before we do, I want to just send a quick, quick reminder that if you haven't already downloaded the viewer's guide for this webinar, please take a moment to do that. You'll find that in the resource widget at the bottom or wherever it is on your screen that you may have moved it around to. 

But that viewer's guide has more information about some of the topics and some of the content that we're going to talk about. It has some spaces for you to reflect on your own practice and what you hear and learn and what questions you might have after the webinar or during the webinar today. I mean, it also has what we think are some really helpful resources at the end of the viewer's guide. Be sure to check that out. And one more reminder before we get started, we are going to be using the purple Q&A widget to engage today. We'll be asking some questions. 

We'll be prompting some reflection. We also know that you may have questions or reflections or comments that you'd like to share. Please feel free to share that throughout the webinar using that purple Q&A widget. I see folks have already started introducing themselves, saying hello. We've got Brittany and Rosalia, our dream team of Q&A support who are all logged on and ready to respond to questions. Really excited. Again, thanks for joining us and let's get started. What we wanted to talk about first is talking about this concept of a family's journey. 

For many families of children with disabilities after their child has been evaluated, after they've been found to have a developmental delay or a disability, they'll often describe this process and series of events that families encounter as a journey. While we know that every family's experience is different, there are some common milestones or events that families might encounter or experience. It's really helpful for us as staff who are partnering with and engaging with families to understand what might happen on a family's journey. Because this can really help us anticipate needs that families might have, priorities that may come up or questions that they might have.

Thinking about this as a process and a journey helps us remember that these conversations about developmental concerns are the first step in a process and not a one-time conversation. Let's take a look at what this journey might look like for a family. Again, every family's experience is different. But like I said, there are some common milestones or common events that families might experience or encounter when there's a concern about their child's development and after a child might be evaluated and found to have a disability or a developmental delay. Some of these common kinds of milestones and checkpoints along the family's journey include concerns. That's what we're here to talk about today. Developmental concerns we know might be identified by the family.

They might be shared by an educator or a health provider or even another family member. Another checkpoint is referral. When a concern — a developmental concern, has been identified and the team agrees that further evaluation is needed to get more information, with the family's consent, a referral can be made to the local agency, a local agency that provides services under the Individuals with Disabilities Education Act or IDEA. This referral might be made to a Part C early intervention agency if the child is under the age of three.

Or it might be made to an agency like a school district or a local education agency that provides Part B, Section 619, or preschool specialized services. Once the referral has been made, again with the family's consent, an evaluation will be conducted by the IDEA Agency to determine whether the child is eligible for IDEA services and to determine what areas of development, speech, motor, social, emotional areas of development the child might be eligible in.

Once the family is — the child is found eligible for services, the child's team, including the family, will work together to develop the child's individualized plan. Either the Individualized Family Service Plan, IFSP, for children who are under the age of three, or the Individualized Education Program, or IEP, for children who are three and older. Then when the family agrees with the plan and gives consent to begin those initial services, the child and family will receive the services that are outlined in their IFSP or their IEP.

Then the last common milestone that I wanted to mention on this journey, is transition. Families of children — all children, all families, encounter many transitions. But for children with disabilities and delays who are receiving IDEA services, there are many different transitions. Whether that's transitioning from Part C early intervention services to Part B services or transitioning from preschool to kindergarten and so on actually throughout the child's life and the family's journey.

One thing when we're talking about the family's journey is really important to remember that the journey isn't linear. For the family, for many families, there might be barriers. There might be delays. And there might be setbacks. Understanding what families may encounter along this journey, what barriers families may encounter, can really help us as we're partnering and engaging with families to, again, learn their concerns, priorities and needs for support and to help identify barriers and help break down those barriers and really be the guide on the side for families along this journey.

Alexis: Next we'll have a brief video where we really want to look at what's helpful on this journey for our families. We'll have a family here that's going to share that with us.

[Video begins]

Woman: It was also overwhelming because, I was taking the first step to get services for my seven-month-old. And we did not have a diagnosis at that point, and we did not have one for another, 16 months or so. In those early, early months at the EEU, the staff just supported us in the journey through every test that we had, and they wanted to know the results. But they also — his diagnosis wasn't what was meaningful there. What was meaningful in his early services was that he was making progress and that he was happy and that we felt supported.

And we knew that we had the right supports in place. They would never really pushed us to do anything. They just asked questions and would make suggestions. But at the right time they just walked the path with us. They really did. And they always celebrated Jack for exactly who he was and didn't expect anything to just change dramatically. Which as parents of a kid with special needs, it's probably the number one thing that you need to know is that people in your community love your kid for exactly who they are.

[Video ends]

Alexis: Wow, that was just powerful. Some things that really stuck out after listening to the mom speak, some things that stuck out was the support that she received from the staff just throughout that process. It wasn't just a one-and-done, but the staff were really a guide from the side throughout that process to support the family. Then asking those questions, and staff actually was there to offer the information to actually assist that family.

That was wonderful. Finally, the last thing that stuck out to me when she was speaking about her son was seeing the child for who they are. Because she spoke about her child saying that he was happy, he was in a good place. Just seeing him for who he was and accepting that and loving that. That family really, really, really helped us on this journey in showing us that we're walking the path with the family, and they're not alone.

Jennifer: I agree. I know we often talk about being strengths based as one of the most important ways that we can approach our work with families. What she said was a perfect example of being strengths based.

Alexis: Couldn't agree more. This is a process and a journey for families. When we think about this process, we also want to think about how we can best support our families. And that's what the use of communication. We want to be there. We want to make sure that we're using people first language. We never want to forget that because that's showing respect for the family.

And we never want to put a situation before the individual. We want to show that respect. And also dealing with families, we want to make sure that we're acknowledging that they are the experts on their children. They are in the driver's seat, and we are just simply there to listen, to support and be that guide from the side. Lastly, when we're communicating, we're just checking in, making sure that they're okay.

Sometimes just having that silent moment with the family is also okay because we don't always have to talk. We don't always know what to say in that moment or have that answer. That silence is also important with speaking with parents because we want to let them know it's okay that we're here with you.

Jennifer: I love that. Thanks Alexis. I love how you're carrying our journey, our road map through the families in the driver's seat. We're in the passenger seat or maybe in the back seat. We've got our road map. We've got our toolkit. Thank you for that. Thinking about our metaphor, let's reverse back to that first checkpoint that we saw on the map. Thinking about sharing developmental concerns. Oftentimes this is the first step in a family's journey when there's the presence of a developmental concern.&

Whether that's the family has the concern or maybe staff or, like we said, somebody else raises a concern about a child's development. We know that there are some relationship-based practices, some best practices, that we can use to have those conversations, those initial conversations about developmental concerns really be effective, supportive, and responsive to families' needs.

As we discuss in this next section, strategies for partnering with families and having those initial discussions about developmental concerns, please try to keep in mind the importance of ensuring a coordinated approach to disability services. Of course, that's program wide. But also, a coordinated approach in our communication and our interactions with families.&

That means that program staff, whoever that might be, whether it's the disability services coordinator, an education manager, family engagement staff, education staff, whoever it might be, that staff coordinate amongst themselves and plan who will be having conversations with families and communicating with one another what information is shared. We know that this can really increase coordination of services, but it also can reduce the burden on families. 

We know that in these kinds of initial phases of starting this journey, families might be talking to lots of folks about their child's development, about their concern. We hear often from families that that can be really overwhelming. By us ensuring that seamless and coordinated communication, we can ensure more seamless conversations and services. One last reminder, the strategies that we're going to discuss today about having these initial conversations, having ongoing conversations, they're important, and they can be used by anyone. 

They can be used by education staff, family service staff or disabilities coordinators or education managers who are supporting education staff. These strategies, while it might seem like we're talking directly to education staff or family service staff, are really important for everyone, want to remember and practice. Before we get started talking about having those conversations about a developmental concern, let us know. We know that sometimes when developmental concerns are shared with a family, families might have many different reactions and responses, and we'll talk about some of those today. 

One reaction or response might be that a family doesn't agree with the concerns, and maybe the family declines to have continued conversations or follow through with the referral. We want to know in the Q&A, is this something that you've experienced as someone who's sharing developmental concerns and having conversations about those concerns with families? Or if you're a parent or a family member of an individual with a disability and somebody shared concerns about your child's development with you, what was your response like? 

If you're comfortable sharing, we invite folks to take a moment to reflect and either write in your viewer's guide or share with us in the Q&A. Has this happened? What was this like? I'm already seeing several responses that just say “yes.” Yes, again, we know that families have many responses. I'm seeing somebody say so many times and that they're coming to this webinar as a disability services coordinator to learn how to navigate these types of responses and reactions with their team.

Lisa: I think this is a great segue into some strategies that will help us navigate that conversation. When parents or families are reluctant or may say I'm not there yet. Let's talk a little bit about that. I think it's very important to know that when talking with families about developmental concerns, as you had mentioned earlier, it's a collaborative process. It should be grounded in those relationship-based practices that we're all very familiar with. 

In having those initial conversations, it's more than just a one-time conversation, a meeting or completing those screening forms. It really is this ongoing process that we're talking about today that requires meaningful relationship building that's over time and really developed and built on trust and partnerships. When those relationships have been developed, of course as we said overtime, it will allow for that space and time to have that difficult conversation. 

Just being really mindful that these conversations take very thoughtful planning and the foundation of a relationship that's already been in place, if you will. And that allows overtime to bring up conversations or concerns about a child's development. Let's take a moment and look at some very specific six relationship-based practices that we should consider when engaging families in this collaborative conversation. We want to describe the observation of the child's behavior. And as a reminder, that behavior doesn't refer to a challenging behavior per se. 

It's really what the child does and the function and how they participate within the environment that they're in. We want to stay positive and be very specific about what we're seeing with the child. We want to focus on the family. By focusing on that family unit and the strong connection between the parent and the child, it's honoring that the parent is the child's first teacher and knows all about their own child. Of course, we want to value their passion. Parents will have many different reactions during these initial conversations and strong feelings, and we want to be mindful and respectful of that. 

Their emotions and reactions, while may make us feel a little uncomfortable, it's really their way of saying that they have a desire to protect their child and they want the very best for them. We want to also support that parental competence, remembering that they know their child best, and it's important to listen to them first before we talk about our concerns. And this one is near and dear to all of us I think just knowing that reflecting on a family's perspective is about asking parents about their own observations and goals. What do they want for their child? And it's so important, and it shows that we value their perspective when we ask that. 

When we really sit down, and we listen to what is it that you want for your family and what is it that you want for your child. I think that's a really critical relationship-based practice and understanding family's goals, values and perspectives. When we have that as our foundation, it really will help add context and understanding for when families share, and they say and the things they do as it relates to their child and their concerns. Then it's very important for us as program staff to reflect on our own perspective. We of course bring our expertise to the work with children and families, but it's so important for us to remember that we are there, as you have both said already, to support and to be a partner in this work. 

It's the guidance and not to promote our own vision or what we think parents should do. In thinking in that context of sharing developmental concerns and having those conversations, what type of information do families really want to know about their child's development? It has been parents have shared that they would like to have more information about the development and the learning and behavior. In fact, they're actually saying they could use more information. That's always good to know the more is better not less in this case. I think also just what, sharing information on what to expect at different stages and age. 

Then really, the importance of tracking those developmental milestones and talking with families about both strengths and concerns. It's not just the concerns that might be there, but it's talking about what they're doing really well. We have that strength-based approach in these conversations. Then receiving very specific age material like before a child enters the next phase or the stage and age has been reported as something helpful. As always, we want to ensure that we're sharing this information with families over time. It's multiple points in time. It isn't a parent-teacher conference per se but really just having these ongoing discussions that we're emphasizing here today.

Jennifer: Thanks, Lisa. I just wanted to point out for folks, we're seeing a lot of comments in the chat, it's great. For folks who aren't familiar with those six relationship-based practices that were on the slide that you just shared, there's more information about those relationship-based practices, those six practices, in the viewer's guide. There's also a link to a wonderful resource that PFC has created that's a simulation about sharing developmental concerns and having conversations with families. 

There's a link to that simulation and some other resources in the viewer’s guide. Definitely encourage folks who are looking for more information about those specific practices to go there. The information that we see here on the screen, as Lisa's sharing, we hear a lot from families that they want that really specific developmental information. What you see here on the screen is information from the Center for Disease Control, the CDC's Learn the Signs Act Early Resources. They have a variety of lots of free resources for families to learn about and track developmental milestones. But also, for professionals who are having conversations with families about their child's development.

Alexis: I think there's even a downloadable app that you can add to your phone for free, which is...

Jennifer: There is, yeah. They just actually made some really nice updates to all of these Learn the Signs materials, both around developmental milestones, but also some of the updates that they made were based on feedback from families about what was helpful to them. Wanted to point out that this is just one of many resources. Our own Early Learning Outcomes Framework, the ELOF, Head Start, is also another great resource to help track children's development on milestones and help families learn about their child's development. Links to those in your viewer's guide. 

As we're moving through to our next section, let us know in the chat what other resources do you use and find helpful when you're sharing information about your child's development or sharing information about child development. And also, how do you share that information? Is it in ongoing conferences like Lisa said? Are there family education nights? Tell us your tricks and tips for having these effective ongoing conversations.

Alexis: While you're putting everything within that chat box, the Q&A, we're going to talk a little bit about the family's reaction and response. I know we're on our road map and we're traveling down the road, but we really want to talk about that initial family response and reaction once they receive this news. It's going to be influenced about many different factors. It's really helpful to understand those common reactions and those factors as we go along. And we'll dive a little deeper into those a little later. 

But first, the family might not agree, so there might be some disagreement. Maybe that's something that they're not seeing. They might be in denial. They also might have that grief or depression about this. Something's going on. They really become down and sad. Or distrust, they might have distrust for the system. Maybe they've had some experiences with discrimination. Maybe they've had some experiences with other social service agencies to where their experience was not so pleasant. 

Now they're on the defense. They have that wall up. They're not really open. They can also blame themselves. They're thinking that something that they didn't do correctly. They're putting everything on them, that it was something, something that was done that just wasn't right. They're going through that process, and then they're seeking other people to input. They might look for other family members. They might be asking questions for others that might be going through this journey. They're going to look for the wisdom from those extended family members. And if they're doing that, this might also delay the process because they want to be sure. 

With that, when we're looking at this, the diagnosis as they struggle, it might be responding based on their cultural stigma that they're going through. Maybe the family is saying some things, maybe it's in disagreement. “Oh, they don't really need that.” “They'll grow out of that.” I don't know if you've ever heard that. Or “they're just young, you know this.” “This is not right.” Those are some initial reactions. But we really want to ask you all, are these consistent with what you've been seeing? Or have you been seeing other reactions from families? And if so, would you like to share that in the Q&A with us? What have you been seeing as a response from your families? 

Are they in disagreement? Or you might have some that are really in agreement, that are really saying, “Hey, I've identified some things and I'm so glad that you caught this.” “I'm so glad that we can work together to really support my child.” What have you been seeing? Let's see, consistent reactions. Those are some common reactions. Yeah, I'm seeing that in the Q&A. Anything different that you might, see? I'm sorry, Jennifer, you can go ahead.

Jennifer: That's okay. I was just going to say, this is reactions that that might be when families aren't quite ready. As Rosa actually in the Q&A just pointed out, maybe they're not quite ready in the moment. But we also know that some families may, who have these developmental concerns, who might agree with when a developmental concern is raised, maybe they've seen something, and they weren't sure if it was different. If it was different enough. Some families actually will express that they feel relieved, or they feel a sense of gratitude when somebody either raises a developmental concern or confirms a concern that they have. 

Today, while we are focused on reactions where families aren't quite ready, and we might need to engage in those different strategies during the ongoing conversations. Not all families react in the same way. Thinking about readiness. I'm really glad to see a couple comments in the chat where folks are bringing up this concept on their own and saying maybe families aren't quite ready when a concern is raised. And again, Rosa said it took seven months for a parent to agree to that referral process. I think that this is really helpful, a really helpful concept as we're thinking about how families react as we're using those relationship-based practices and really reflecting on a family's perspective. 

Trying to understand and value a family's passion about their child and how that might be shaping their reaction to hearing about a developmental concern. I love this IDEA of thinking about it as readiness. And readiness in a continuum, because I know I've raised developmental concerns with lots of families and been met with some resistance. Before I learned about it and thought about this concept of readiness, it left me feeling a little bit helpless. Like I felt like I had encountered one of those roadblocks on my own journey. Like, what do I do next? Where do I go from here? If this family doesn't agree and doesn't want to move forward, what else can I do? 

But as I've learned more about this concept of readiness, and like we said, a continuum that every family will engage in and will meet families at different points in their readiness. But there are things we can do to, one, understand where families are in their readiness, partner with them to understand. But then also during these ongoing conversations to help enhance their readiness and help walk alongside families as they move on that path towards readiness for some families. Families, we said, react differently when concerns are shared. They might agree and be ready to move forward. 

They might be surprised to hear a developmental concern but maybe want to learn more and ask some questions. And then some might disagree with the concern. They might want to not engage in any further discussion and then everything in between. When we're thinking about readiness, what we're really thinking about here and how this is described in the research literature is ready to act on concern or ready to engage in the process of learning more and potentially engaging in services if the child is found eligible. 

When we're thinking about readiness, it's important to note that we're talking about emotional or psychological readiness. It's also important to remember that readiness is really individual, and that readiness can be influenced by many different factors that we'll explore more on the next slide. When we think about that readiness for engagement, we know that families reach readiness or that path to readiness can look different for many families. But as families reach or approach readiness, the type of information that they seek and that urgency to seek out services can really actually develop in pretty predictable ways based on how ready they are and where they are in that readiness process. 

When we look at what might influence readiness, this is where our work lies. As we're partnering with families, as we're engaging with families, as, like we said, we're reflecting on their perspectives and working with them to understand their perspectives and priorities and concerns. These are really important things to keep in mind. There is more information in your viewer's guide about all of these different factors that might influence a family's readiness to act on concern, but I just want to highlight a few. 

One of the things that really influences a family's readiness and how likely they are to act on a developmental concern and follow through with a referral is their level of concern. Research directly shows that parents' concern about their child's development or behavior is directly related to how likely they are to engage in care. When families have a concern about a delay or a behavior, they're more likely to be motivated to act on that concern. 

That motivation, again, remember, is psychological or emotional. That motivation can also entail how much support or how a family is able to engage in care. Do they know who to call? Are they able to communicate with a professional or a provider? If there's an appointment, are they able to get to the appointment? Are they able to understand the paperwork? Are they able to complete the paperwork? That motivation, once families reach that psychological or emotional regulation, I'm sorry, not regulation. We all want emotional regulation. That emotional motivation. There can also be some other potential barriers that need to be addressed. 

When we think about that concern and how readily a parent or a family member might recognize a concern on their own or might agree with a concern that's brought up to them, is influenced by a couple factors. One, as Lisa was sharing earlier, is their knowledge of developmental milestones. What's happening in each stage? What should I be expecting? What do I do when my child, how do I recognize and what do I do when my child hasn't reached a specific milestone? And then awareness of warning signs or red flags. Another factor that may influence a family's readiness to act on concern is the perception of others. 

Alexis talked about this a little bit earlier. When there's a concern, either an internal concern, a family of, a parent has a concern about their child, or if somebody brings up a developmental concern or a behavioral concern to a family member, many parents, so many parents, look to others for feedback about that concern. We know from our experience and also from the research that family members look to their friends and other parents most often for more information or as a source of validation.

Really specifically for many families who might only have one child or maybe have an older child who has a developmental delay or disability and might not be aware of what those developmental milestones are. As they're looking to friends and other parents for that validation, they're often looking to that person's child to compare the development of that child to their own child's development. Some families may look to their own family members, their mother or father or extended families. Oftentimes it if it's a two-parent household, a family member might look to their parent, or I'm sorry, their partner or their spouse to see if there's agreement on the concern. 

Oftentimes we see, and this is actually reported in the research, that when mothers raise concerns to fathers, many fathers are reported to be less worried or less concerned or less eager to seek services. That's another dynamic that we might want to be aware of is what's happening within the family and those inner family dynamics. Then the last thing I wanted to point out here thinking about others' perceptions is that some families, some parents may look to medical professionals when there is a concern that's raised to them about their child's development or when they're bringing the concern to about their child's development to a medical professional. 

I think this is really important to note is that the response from medical professionals when families ask about developmental concerns is variable. It's really variable. We know from research that fewer than 50% of pediatricians conduct developmental screening. They might not have that knowledge of the child's development and where they are in the developmental trajectory. When families of children with disabilities and diagnosed, delays are asked to look back and reflect on those early days of having a concern or bringing up a concern, a really high percentage of parents who asked their family pediatrician or some medical provider about developmental concerns were actually told to wait and see. 

This can definitely be something that can influence a family's reaction and their readiness. I actually just see a chat here that's many of our education staff are feeling undermined by other family members, by the pediatrician, by friends, just a couple more that I want to point out, a couple other factors that might influence family readiness. Because it seems like these are really hitting with folks, and we're glad to provide this information. 

Child and family characteristics, that can definitely influence how ready a family is to act on concern. Specifically, when we're looking at children, we know that the type of concern is actually linked to how likely a family is to act on concern and follow through with a referral. When there are physical delays, language delays or behavioral concerns, families are often more likely to agree with concerns and act on the referral. That we also know that in terms of family characteristics, there are a couple of family characteristics that result in increased or decreased likelihood to act on concern. 

A family history of developmental delays, actually families are more likely to act on concern or raise concerns when there's a family history. And it's actually interesting with the child receives care in the home. It's been shown that families are likely less ready to act on developmental concerns initially and might need more time to enhance their readiness. Family knowledge and beliefs, I talked a little bit about that earlier. What families know about development. What they know about milestones, but also thinking about a family's culture and a family's value and a family's caregiving practices and where they are in the stages of parenting. 

A family's beliefs about the role of the parent in their child's development and the role of different adults in the environments and what that plays in the developmental process, that can impact how family respond to concerns. We also know that families' knowledge and beliefs about disability can impact how ready they are to act on concern and how they react to hearing about a developmental concern. As Alexis mentioned, some families might hear about a concern and hold a belief or a hope that their child will eventually catch up. 

They may be told by somebody, maybe a medical provider, that the child will catch up. They might be told by an extended family member, "Oh, so and so didn't talk until they were this age, and they're fine.” We also, thinking about the knowledge and beliefs about disability, it's really important to point out that language can be a significant barrier for a family who's learning about developmental concern, especially if the family speaks a home language in which there's no word or no concept for a particular disability or diagnosis. 

When we look at the research and look at what results in that more increased likelihood that families will act on developmental concern and follow through with the referral, it's when families have knowledge about development, when families know about the benefits of screening and the benefits of catching these missed milestones or red flags. And also, when families know about the benefits, when they know about early intervention and specialized services, and they know about the benefits of those services. 

And then certainly family culture can definitely impact a family's readiness. It can shape how families view disability and the cause of a disability. It can shape whether they want to seek treatment and who they seek treatment from. And it can also shape a family’s relationship with professionals. There's lots of information in your viewer's guide. This is just a high-level overview, and we want you to explore, reflect and come to my peers and ask us questions and engage with your colleagues in conversations around this concept of readiness. 

Let's hear from a mom who talks a little bit about this concept of readiness and shares how her culture impacted her perception when a professional raised concerns about her son's development.

[Video begins]

Woman: Culturally, I'm from East Africa. And we are immigrant here to United States and culturally, it's just, people it's not easy for them to talk about it. Everybody, I assume everybody has their perfect kid, and if someone has some sick kid, they definitely, they don't talk about it. And you feel sorry for them. A cat could be curious things about it because culture, like you know, when you see people, you're not supposed to, a lot of stuff you're not supposed to be curious about it because like you'd be rude. And you have to be sensitive to the people. 

And but I'm like I'm trying like, it's okay, you know. I just want to know more about it. But if you try it, you could make it that parent uncomfortable. And they a lot of time you see sometimes they will hide their kid. You will see very, very few people that will be okay with the situation. And knowing, and then we'll call names later because of the whatever disease or whatever they have or diagnostic whatever. 

That kid will be pissed about it, and it just, as the parents it just takes you like an already picture it, my kid might never like really play with the kids and be part of them, and he would not be accepted. And you feel like there's just something, you must have done something wrong or something's wrong with you and your kid. You just have that feeling that you just want to hide, uncovered, because some reason, I don't know how we get there, but it's just not okay.

[Video ends]

Jennifer: That's a really powerful video. It looks like lots of, it's hitting with lots of different folks in the chat. Just a quick reflection. We're going to look at lots of videos in this next section from families of various cultures. It's worth mentioning and remembering. This mom that we just saw, she's from East Africa, and she described some of the reactions and perceptions and beliefs about disability in her culture. Those might hold true in other cultures. And for some families from her same culture, they might have different beliefs about disabilities. Again, it comes down to the importance of those ongoing individual conversations with families to really understand what their perspectives are.

Let's jump into this next section and hear from some families about what was helpful to them, what questions they had, what information they received or that they wanted, as they engaged with professionals about concerns or engaged in ongoing conversations about concerns. As you watch these videos, we really encourage you to reflect on what you hear from these families and consider how these perspectives might impact your practice as you work to partner and engage with families.

Alexis: Awesome. Our next video, we're going to see a mom here, and she's going to share the importance of understanding family's perspectives, concerns, and hesitations.

[Video begins]

Woman: Yeah, just when you get a kid that you doing the evaluation for IEP, know that the parent is under a lot of pressure by the community that they didn't produce the perfect child. They're under a lot of other stress. And then those meetings are very intimidating. The parents flatly refuse. I get that look from the educators like what just happened. And I normally after the parents leave, I tell them like there's a stigma around it and people do not like IEP. They think there's something wrong with the child. They didn't produce the perfect child.

I try to educate them the stigma around it and that I try to share with them. Even myself, I was very scared when I first came across. And then they're like what, this is helping them. This is not something that the general, like a general teacher could not do. And I'm like, you have to understand the stigma around it. And then they try to, I try to just like navigate between the two. And then the parents, when they ask me like, what's your experience? I try to tell them, I came across this as a as a teen mom, and I really do know what you're feeling. And a lot of parents actually end up signing after I tell my story and how my son, how much it helped him speak and how much it helped him with the education system.

[Video ends]

Alexis: Wow. I heard a lot with that especially a reminder that the families are already under stress. They're already going through a lot, and they're scared about that potential stigma that might be associated. We always want to remember that parents are going through something and understanding their perspectives.

Lisa: Absolutely. Thank you for sharing that, Alexis. This next video I think is going to be also equally important about that ongoing conversation and the importance of that back and forth and conversation that happens between program staff and families. Let's take a look at this mom.

[Video begins]

Woman: We just need both sides to have patience. It's okay to have a concern, ask questions and give them chance. Go back another week, ask again. Go back again, answer the questions. Or unlike me, I didn't know I had a, I knew I had a question, but I didn't know what to ask. It would help that. And I also I know that a lot of people, they don't feel comfortable writing a lot of times in English. Even so it helps that if you have someone ask them and help them answer those questions. But if you just hand it to them forms, you're not going to get what you ask for. There's a lot of progress needs to be made there. 

And just don't give up on them. Keep approaching, keep approaching, keep asking. A lot of time, the way you will get a mom like me my attention, we are concerned. Your kids have those deficits or need those help with these areas. And we think me and you together, we can help. A you get their attention I feel like. Parents, you just don't give up on them to, you know, just show them there's a problem. And we think this could be the solution. And we think this could be how you need it to do. And we're here to help you. We're here for you. And just don't give up on them. And as long as they feel like, you know, they're not alone, I think they will talk to you.

[Video ends]

Lisa: Wow. For me, that don't give up on them. I mean I could summarize many other things that she said here which we have to keep in mind that patience, just and be there as a partner and just don't give up on them. I think that's so important. I think one other important thing to consider here with her sharing is that not all families engage in the same way of communication. 

Written communication may not work for all families. That's so important to remember that while forms are part of this journey and process to provide a form for a family to complete on their own, it's not going to be the ideal or individualized way for them. I think that's something very important to remember here from her.

Alexis: Next we want to go into another video where a mom will share the importance of allowing families to ask those questions and also connecting families with other families, especially of the same culture.

[Video begins]

Woman: I think it's very important to let the families know the process, letting them know that they have an input, that they have a choice to have an IEP for their child or not. But also having parents' voice, you know, having other parents tell them, you know, what the process is like and how beneficial it is. And I think just being open with the parents is very important. Transparency I think is very important. Just allowing parents to come back and have, bring back their questions is important. 

To me, it would be very beneficial. I come from a Hispanic family, so it's really hard to accept special education. Even my husband had a hard time at the beginning. Now he's seen how beneficial it is and now he's going with it. But still some family members are not too okay with it. So just having, you know, an open house for families who are in the special ed program and letting them know what that looks like. And like I said, the benefit, like I said, partnering with another parent from the same culture always is helpful. I think that would definitely seal the deal. 

And I don't know, for me it was easier because I'm in the education field. I know what's best for my son and now my husband is in on it. But I can see how difficult it might be for a family that doesn't know what it looks like. Just partnering with different people, with your community, I mean that's valuable, building a community and you know, having people that look like you. Having that voice is very easy because it's intimidating when, you know, somebody who doesn't look like you is telling you look, this is, you know, what we see. Or sometimes just telling you what to do or…

[Video ends] 

Alexis: Wow, that was so powerful. Some things that stuck out to me, especially with that, was just that connection. Allowing parents to connect with each other and ask those questions and encourage your families to bring back those questions. Because they might not have them in the moment. We'll be there. Go home, write them down. I'm always available, so you want that open door to where parents can feel comfortable with expressing and asking whatever it is that they might need. Next on our road trip, we're packing that bag. 

We're getting ready. I know we're almost to, well we're not to our final destination, but we've been on a little journey this afternoon. As we're going along, we've already discussed those strategies for developmental concerns. We're sharing those developmental concerns. And then the opponents of those ongoing conversations with our families about their child's development. Now we want to really look at engaging, partnering, and supporting our families. 

When we looked at reflecting on conversations, this is also available within your guide that you have as a resource. I'm not going to go through every single question, but we have a lot here that you can take back. Did I begin the conversations from a strength-based perspective? Remember, we're going to start with the strength, we're going to start with that positive, and then we're going to move forward. Have you invited, listened, and tried to understand the family's perspective? That's so important because we can see things from different lens. We want to make sure that we're highlighting and uplifting that family's perspective first.

Jennifer: Thanks Alexis. In these last few minutes thinking about also in addition to reflecting, what can we as program staff do to engage, prepare ourselves, pack our bags to engage in these conversations thinking about that key information to have. Information about developmental milestones, information about specialized services including the benefits and what they might look like and how they're provided. And also, some really tangible next steps. Who do I call? Where do I look? What do I say to them for some families? 

Then also thinking about as a part of the ongoing conversations, we heard this from a couple of those moms. But be prepared not only to be the guide on the side ourselves, but to help make those intentional connections with, between families and other families and other forms of social support. Thinking about what that support might look like, the appraisal, so somebody to consult with to corroborate about those developmental concerns. Informational support, so thinking about the resources and the milestones.

Emotional support, as you mentioned earlier, Alexis, thinking about comfort and maybe reassurance. But also thinking about being prepared to connect families with that instrumental support that they might need to support them as they engage in care. Whether that's transportation or translation or many different other types of support that might break down some of those barriers that we identified earlier.

Lisa: As you plan and prepare for those conversations, you want to have your resources ready. We have many resources in our guide as both Jen and Alexis have mentioned. But we have the CDC Learn the Signs and Act Early, the PFCE building partnership series, obviously the sections for the DSC orientation guide and many more. Be mindful of that. Of course, we have our Engaging Families of Children with Disabilities webpage. This is about best practices and ways to partner with families during this journey as we've been talking about today. 

That's really about those developmental conversations that we have in the very beginning all the way to that transition from kindergarten to school age program. Check those resources out as well. And then finally, I know we're at the top of the hour, but it's all, I think it's so important to remember that we have to take care of ourselves as well. 

Connecting with our colleagues and friends or find a mentor, someone that we, as we're in our own journey with families and having these difficult conversations and talking about the concerns and when to partner with them to bring out the best for their child. We have to worry and care for ourselves and making sure that we just have the right internal support as we prepare as well.

Jennifer: Perfect. Thanks Lisa. One way that we know that can be a support for ourselves is to engage in professional development and professional learning with colleagues and others who are in the same role as us. I wanted to point out before we say goodbye that we are coming up on a really exciting free professional development opportunity that's hosted by DTL called Our Learning and Leading with Equity Institute. This is a really skills based interactive skill building event that's centered around advancing equity including disability inclusion. 

This is an in-person event. It's free for program staff to attend. It's really directed towards ed managers, program directors, DSCs, coaches, and home-based supervisors. It's coming up. It's in Dallas from June 6th through the 8th, so we hope you can join us. You can, our Q&A supporters will pop a little link for registration in the chat, but you can also follow this bit.ly that's here on the screen. 

That's it for this time. We thank you again for joining us. We thank you so much for the work that you do every single day on behalf of children and families. We know it's not easy work all the time. We see lots of confirmation of that in the Q&A, but we also see lots of confirmation of people really wanting to do the very best that they can and having children and family's best interests at heart. Thank you for that. 

I have two invitations for you. One, please join us. I invite you to join us on MyPeers. I know that there are many questions, many thoughts, many comments that came up today that we couldn't get to or that sparked more. There are two different communities that we'd like to invite you to join us on. The disabilities and inclusion MyPeers community, but also the PFCE deepening practice community that's really focused on deepening practice and engaging them around collaboration and problems of practice with other program staff who support families.

My second invitation for you is to mark your calendar and join us for part two of our Partnering with Families to Support Inclusion series, where I'll be rejoined by the amazing Lisa and Alexis to continue our conversation around partnering with families and in continuing to support advocacy and support families along their journey. Thank you for joining us. Thanks for hanging in with us for a few extra moments. Be sure to download your viewers guide and enjoy the rest of your day.

Lisa: Bye. Thank you, everyone.