TRANSCRIPT - TSBVI Coffee Hour: The Value of Family Engagement: The Transformation to an Equitable Approach for Service Delivery Ð 8/22/22 >>Megan: My name, as Kaycee said, is Megan Cote and I'm the technical assistance coordinator at the national center on Deafblindness. I know I speak not only for myself but my fellow co-presenters that we really are delighted to be invited to share with you today and we're happy that you're here. I know Kaycee just mentioned this but in case you're just arriving, I'd like to let everyone know that the handout for today's presentation includes descriptive transcripts for the video and pictures that we'll be sharing today. We'll also drop the picture descriptions in the chat along the way so everyone can have full access. I'm going to kick things off today by providing you with a very quick overview on today's session. So you can pull up the PowerPoint and go to slide 2. So participants will learn about the Deafblind Network definition of family engagement and the associated family defined priorities that are driving our shared outcomes and activities. We truly believe that this definition is not only for the Deafblind population but is a guidepost for all family-centered work. The importance of integrating family lived experiences to our equitable approach to service delivery will be discussed and how enhanced partnerships with family organizations have improved the focus of our work, our activities, our outputs and outcomes across all our initiative areas. Next slide, please. So for those who may not know, the national center on Deafblindness or NCDB, is a technical assistance and dissemination center funded by the Office of Special Education Programs whose goal is to improve services, educational results, and quality of life for children who are Deafblind through collaboration with state Deafblind Projects and other partners across the country. NCDB has four primary initiatives. The first is family engagement and then identification and referral is our second. Our third is interveners and qualified personnel, and our fourth initiative is transition. Next slide, please. From October 2021 through March 2022, the Deafblind Network engaged in a five-month visioning process to define commonalities of support for family engagement that our network could use to inform project activities, define intended outcomes, and solidify state and national level collaborative partnerships to truly recognize and honor family as the child's primary teacher and champion. And thus elevate family voice by providing an equal seat at the table by planning and informing our work. As this presentation unfolds for you today, you'll learn more about that report and its implications. Now I have the honor of introducing a video of Donia Shirley, the vice president of the national family association for Deafblind or NAFB. We are grateful to you for the time you spent creating your story to provide everyone with a lived experience. As Donia shares her journey, the recording will have pictures and videos of her family engaged in their community. We will also, as a reminder, be dropping the descriptions in the chat as the video plays. So without further ado, here's the video of Donia. [Captioned video ] >>Jana: Thank you, Donia. This is when we should drop the mic. Powerful story. And thank you to Donia and her family. I'm Jana Villemez, the family engagement initiative lead for NCDB and in the next few slides I will be validating what Donia spoke of and what we found in our research that provided a basis for the report on the value of family education for our families who have children who are Deafblind. Donia's story is unique to her, to Jaxson, and her family's situation in so many ways. Donia's strengths, abilities, and unique opportunities created the ability to make change for Jaxson. However, in our research that Megan mentioned that provided the report, Donia also provided evidence in her story that's universal to all our families whose child is Deafblind and have multiple complex needs. Foundational to our work, envisioning an equitable approach to family engagement is the understanding of the uniqueness of Deafblindness and the impact that this has on the family. We want to acknowledge that this impacts you and your work as well as educators, but we believe that to understand the family experience, unlike other families, it's key to emphasize the uniqueness of Deafblindness. So I ask you to think of all our families as they hear this as well. Deafblindness is one of the lowest incidence disabilities. Approximately 10,000 children and youth in the United States with great variability in terms of age, race, ethnicity, cause and severity of Deafblindness and type of hearing and vision loss. 90% of the population have additional physical, medical, or cognitive disabilities. Deafblindness is described as compoundingly complex and multiplicative, not additive. A layering impact of Deaf plus blind plus rare with complex needs, including medical, cultural, geographical, and financial. We also know that just over half of our population are reported as having complex health needs and families of children with Deafblindness experience higher than average child mortality rates of their loved ones. Next slide. Multiple quality of life issues are a complex concern as well. Too many limitations exist, beginning with attachment, the child's communication development, finding and receiving relevant and meaningful information unique to the child's needs, limitations in educational and medical service support, lower expectations of the child, community connections, and family support frameworks. Next slide. Add to the limitations that exist, the high demands and stressors that compound the complexity of our families in managing, coping, and expectations that we put on them to learn. These include a high number of stay-at-home moms, high family isolation, high mental health issues, and a high correlation of cultural and socioeconomic conditions impacting success. Next slide. And to validate Donia's story, without clear sources of information and systems of support and community connections, it may be difficult for families to find and elevate their voice and clearly articulate their needs. This requires family-centered connection and our work is to start where families are. Grow family connections with other families and with the Deafblind community. Empower and honor the family and strengthen the family voice. Next slide. We also know we need to work towards elevating family needs by deepening professional sensitivity and understanding of the unique experiences and needs. And by enabling equity of family engagement through universally accessible, culturally affirmative, and unbiased services and supports. And, lastly, delivering meaningful information that's in multiple modalities so it can reach all families in all their diversity at key moments in their personal journeys. The term "family engagement" for the Deafblind population, it's become to mean so much. My friend and colleague will explain. Edgenie. >>Edgenie: Hello, everyone. We're so glad you're here today. I have the pleasure of introducing to you our family engagement definition, which is part of all of this. As we unpack the family engagement definition, we have multiple pictures of families who have children and young adults who are Deafblind. The pictures represent the diversity of our families who are part of our national community. This includes diversity in age, abilities, cultural backgrounds, and geography. Again, the picture slides' descriptions will be posted in the chat so everyone will have full access. Following months of deep study, the peer learning community dialogue and feedback loops with our national family-based Deafblind organizations, we crafted this family engagement definition. It's about what family engagement means for families of children who are Deafblind. As we crafted this, the very first committee that put this together was comprised primarily of families. And then as we received feedback from all of our national family-based organizations, feedback came from approximately 100 to 130 family members who have loved ones with -- who are Deafblind. So as we review this together, I think it may be helpful for you to know that we were very thoughtful in the selection of every word and every sentence. The definition is about professionals listening to families and us doing the work. Every sentence is about the why. And all of the statements combined together serve as an anchor for everything we do, not just professionals in the national Deafblind Network but for all of us who partner with families who have children with disabilities and lifelong medical conditions. Let's explore this valuable guidepost together. Families are the guiding force behind all life decisions for a family member who is Deafblind. Through unique lived experiences drive our shared responsibility. Next slide, please. Family engagement helps us know what the goals are as they choose for themselves and their loved ones. Family engagement is helping families find and elevate their voice. While feeling a sense of belonging in their community, family engagement is the genuine relationships in and outside of the family. It is the systematic inclusion of families in activities and programs that promote children's development, learning, and wellness, including in the planning, development, and evaluation of such activities, programs, and systems. And this portion of the definition comes from the U.S. Department of Health and human services and the U.S. Department of Education report that was published in 2016. Family engagement promotes family sharing of resources with and among families. Promotes equity and inclusiveness while remaining responsive to families' cultures and language, and honors each families' dynamics, beliefs, values, and priorities. It's about connecting all family members within the Deafblind community and their communities of choice. It increases belonging and empowers them to plan and enjoy their lives. And empowers them to plan and enjoy their life. Next slide, please. While still brand new, we're already started. NCDB has already begun working with state and national partners to implement practical approaches to the family engagement priorities. Specific examples include the Texas Deafblind Project has an action plan that is in full swing. We're beginning with family-driven assessment and how we're going to be using this, doing the work as a project, and as a state. And the results will drive our family engagement efforts moving forward. Check out our project's updated website as within example of implementing some of the report's recommendations. We also had the opportunity to see Donia's blog and to hear from her today. Another example that we're doing is training, just like we're doing today with the Coffee Hour. If you are not part of the national Deafblind educator network , we would invite you to join us. Right now we're in the middle of a series, a three-part series called the Power of Story, families of Deafblind children telling their story. The next one will be September 13 from 6:00 to 7:30 p.m. central. As Megan mentioned, we have multiple opportunities in front of us, collaborating with our national family organizations such as NFADB, the charge syndrome foundation, CDLS, CFBD. Lastly we're engaged in a lot of collaboration with the center for parent information resources and the state parent centers . With that, I'd love to turn it over to our dear friend and colleague, Patti McGowen, the president of NFADB. >>Patti: Thank you, Edgenie. Hello, everyone. This is Patti speaking and I am here to talk to you about the national family association for Deafblind as the president . NFADB is the only national organization for families with individuals who are Deafblind. NFADB serves families, regardless of etiology, all abilities, and across the life span. We like to say birth to Earth and beyond. NFADB board is comprised of families and professionals, many of our board members are from Texas. Currently there are six. We have three family board members, two professional board members, and one of our special advisers, all from Texas. NFADB promotes a strong national affiliate network, which is any association or group organized and led by families with individuals who are Deafblind. This can be both state and/or national. NFADB partners with the affiliate network to improve opportunities and services for families. At this time, NFADB has 13 affiliates in our network and two are from Texas. The Deafblind multihandicapped association of Texas, known as DBMAT and Texas CHARGers. NFADB promotes partnerships at local, state, and national levels . We partner with state Deafblind Projects, our affiliates, families, and other family-based foundations or organizations. NFADB, it was such an honor, was asked to partner with Texas outreach and Deafblind international for the March 2021 Texas education symposium. We collaborated and planned the family day of the symposium and board members served as the voice of families on the various panels during the symposium. TSBVI is an organization/agency member to NFADB. There are three Texas organizations that are members and 54 Texas family members to our association. We would love for everyone on this Coffee Hour and we invite you all to become a member to NFADB. NFADB partners with national organizations to build strong service systems. NFADB together with national center on Deafblindness, NCDB, Helen Keller national center, the Usher Syndrome coalition, CHARGE syndrome foundation, and the global foundation for disorders meets monthly as a group working on cultivating partnerships. NFADB knows partnerships provide a unified voice that supports and advocates for national policies . Advocacy is our mission at NFADB. We know we're stronger together. Please view our position papers, our family advocacy training and education, known as FATE, and our new effort of our newly-developed family advocacy coalition educating for Deafblind. We call that FACE for Deafblind. All of this and becoming a member, plus so much more, can be found on our website at www.nfadb.org. Next slide, please. The NFADB board as well as NFADB affiliate representatives and our state NFADB ambassadors had the opportunity to give feedback during NCDB's strategic review of the family engagement priorities as a national family-based organization. This was an opportunity to elevate and encourage the family role and voice in national organizations. This will continue to support our network nationally to expand each organization's individual capacity to support family engagement. NFADB will continue to maximize diversity family leadership and engagement on a national level. NFADB will also deepen the reach and impact of national organizations to the local family level. We at NFADB are already discussing ways to identify and reach the underserved families. It is important for NFADB to continue to promote family engagement and our continued efforts of collaborating and teaming on behalf of the families we serve. So I'll hand it back to you, Edgenie. Thank you. >>Edgenie: Forgive me. Sorry about that. All right. Well, I'm so thankful for this opportunity to be able to share with you the family engagement report and all the ways we can do this. So we have a question for you. In the chat, please share what you're thinking. How can you and your organization work to create a system of keeping the family in the forefront of decision making? Again, how can you and your organization work to create a system of keeping the family in the forefront of decision making? So share your thoughts. I think we probably have people in deep thought and what we would invite you to do as you're pondering that is know that this will not be our only conversation. We are so eager to continue to talk about this. I love this. Julie says include the family members on advisory committees. Jennifer said first by ensuring that the families are even aware of resources. Thank you, Jennifer. Yes. These are fantastic ideas. Spend time outside of the IEP meetings receiving family input. Thank you, Kate for sharing that. Yes. Spend some time with the families, preferably in their homes with the only agenda of listening to them, learning their stories. Linda says communication and exploration. And I believe this is Margaret. Margaret says families to be included in therapy and classroom sessions at school. Yes. That's great, Margaret. As we give people time to add comments, why don't we go ahead and go to the next slide so that we can highlight some of the resources. Many of these were discussed as we went around and talked about this. But if you have not had a chance to look at the NCDB, the national center on Deafblindness, on their family engagement website you'll be able to find many of these wonderful resources, including the recommended knowledge and skills for state Deafblind Project family engagement coordinators. A document about how to provide technical assistance to families. This would be a great tool to kind of explore ways that you can make sure that the family voice is driving everything that you're doing. There's another document called increasing cultural competency and the cultural competence resources could all be a valuable resource for you. Working together for families is another one. And then of course if you look at the family section on the NCDB website you'll have a chance to really have opportunity to hear more family voices there. And then as Megan mentioned at the beginning of our time together, the last document listed here is the full report, including all of the priorities and that which includes examples of what that might look like. Francesca, thank you for sharing. Entry and exit surveys. Those are very valuable. Keep the comments going but this may be a wonderful time for everybody to come back on camera and we will open it up for questions. If anybody does not have any questions, please feel free to post them but I also wanted to invite any of our wonderful presenters. Do you have anything that you would like to share? Kate said I'm wondering some of the most common feedback areas you hear from families. Where do they feel the least involved? Great question. >>Jana: This is Jana. I'll just share from what I've heard from our families and their stories is it goes beyond being involved. It's actually their biggest concern is being heard and so that's something that we kind of need to be cognizant of. The other is the overwhelming complexity of an IEP and how they learn what an IEP even is after they've already learned the medical jargon and maintaining their child's stability in trying to keep their child alive at the same time. So there's been a lot of insight from families -- and Donia can probably also refer to this as the insight of also realizing that their anxiety creates an atmosphere of what teachers might not understand. And so they have learned that they need to be a little more aware of the issues of being overwhelmed, anxiety-ridden, and the grief that goes on in their lives from a personal perspective. I don't know, Donia, do you have more to share? >>Donia: Yes, this is Donia. Certainly in regard to having a child with medical complexities and then going through the IEP process, I think for me what was such a shock was recognizing that I had that specialized knowledge about my child's medical care and the team in our district did not. And so I really -- at the time Jaxson had a tracheostomy and we had to go into some hard details about what that would look like if he didn't have that level of care, one-to-one, and so, you know, that's -- there's so many layers to that because, one, you're having to explain the medical part of this as a parent who is not medically trained. But, two, you're also having to share some of your worst fears. We had to go into detail about what his -- what it would look like if he didn't get immediate medical attention and what the results of that would be to be able to advocate for him. It was a very emotional experience and so that's one of the difficulties, certainly, as you're navigating that IEP experience. >>Edgenie: That's great, ladies. Thank you for sharing. I think sometimes our families have shared too that, you know, when it comes to policies being created, maybe procedures being created that while it is so difficult for them to perhaps attend hearings or to give, you know, written input in all of that that they sometimes feel left out, being a part of that process. Are the decision makers aware of what impact this might have on families and what the reality might look like. So I think for us, for me personally I know in the work that I do, that's been a real call to live by that wonderful statement that has been around a long time. Nothing about us without us. So when decisions are being made, whether it's in an IEP or, again, we're looking at changes in programming, policies, procedures, you know, making sure that the families are given multiple ways of providing input and, you know, what better way for that to happen than the decision makers to spend time getting to know families and listening to them. >>Megan: Edgenie, this is Megan Cote speaking. I would add kudos to everything you guys said and I'm in agreement with it all. But the other perspective around the question about, you know, where do they feel the least involved. For me, as a technical assistance provider, what I worry about is who am I not involving. So part of the purpose of creating these priorities was to really stop and pause and examine our practices. Are we serving the easiest to serve families who have the privilege of being able to show up at parent night? Who have the privilege of being able to take time off work to come to an IEP meeting. Like, there's a baked-in level of inequity within just being able to have the ability and time to be able to show up, learn, and engage with the people that are providing either medical support or academic support to your child. It's really within both systems. And oftentimes it's easy to serve the easy to serve families because they show up and they're able to be present for whatever it is that the school or the technical assistance provider is putting on. So part of our challenge is to really say who are we missing, who are we not getting to the table, and in what ways are we trying to do reach out with either national or state-level partnerships to find the families from the marginalized populations. And so for us, really, that's what we're trying to begin to really lean into earnestly addressing systemically is who haven't we invited to the table, just to begin to really do a better and more deliberate job with the child find. And then the second component is once those individuals are found, how are we distributing content and information and opportunities to engage with us in ways that are interesting, relevant, and needed for those families. And so that's a whole different layer of examining our practices and say are we going to the default system of sending out e-mails and expecting families to have a computer, have Internet, have the time to read the e-mail, and then engage with us and decide that it makes sense for them. And are we even translating all the materials into the languages that we're hoping will catch them if they have all those precursors to be able to actually see it, read it, and then respond to it. So that's a whole extra layer on top of Kate's really important question that we're hoping to raise everybody's awareness about. Are you really meeting the family truly, as Jana said, meeting them where they are. >>Edgenie: This is Edgenie. That is so, so good. Kate posted, yes! We so often don't remember the privilege behind just being able to attend meetings, back to school nights, et cetera. This is such great feedback. Thank you. Thank you, Kate for that great question and this wonderful conversation. Does that bring up other thoughts that we'd like to share or another question from our participants? >>Patti: This is Patti, Edgenie. NFADB has an advisory board committee outreach and under outreach is our membership. And we've talked about hopefully getting a grant so that we could try to identify the underserved families. You know, a true membership marketing manager that could help us identify these families. So we're talking about it. So we would definitely love any ideas and suggestions to NFADB as a nonprofit volunteer organization. But this is certainly on our radar. >>Edgenie: This is Edgenie. I think that, Megan, you've put a very important call to action for all of us. This report is -- there's so many critical elements that thankfully will drive the work that we have before us for many years to come. But giving us the thought of how are we reaching all of our families is such an important one that we'll will take continuously revisiting, figure out how to do that. I personally think that the people who will help us learn the most are the families themselves. What's a meaningful way to do that. Let's see. I'm looking for comments. Oh, Kate did another great comment or question. Apart from this excellent Coffee Hour, what can we do to best support you in sharing this information? Huh. That's a great question, Kate. [ Laughter ] Anybody have thoughts? >>Megan: So I feel like this is Jana's turn to speak but I'll jump on the bandwagon first to let you all know some exciting next steps in NCDB's work. So we are circling back to all the partners with whom we solicited feedback on the report to talk to them about how we can collaborate around implementation of the priorities and we have actually been invited to go to the 2022 national family leadership conference that's being co-sponsored by all the parent centers across our network as well as family voices. And so it's going to be a really great opportunity because Jana and Patti and I will be doing a presentation there as well about the impact of family engagement. And then post their conference and having a really great opportunity to network throughout their conference. We'll be having an afternoon meeting with them to think about what next steps are in our shared work together, which I hope will not only help with our child find and referral processes but also help to continue to enhance the knowledge of our partners that often find and can refer and do refer kiddos to our state Deafblind Projects, which will be really important because the work they do is a little unique from ours in that they really get involved in advocacy and helping parents understand what their IEP rights are, et cetera, and state Deafblind Projects, that's not really the deep work that most of the state projects do because they have that partnership with the parent center. So we're really excited to be attending their conference, networking with them, and seeing where that beginning meeting around forging collaborative partnerships, how that can impact the number of kids and families both that we can find. And then I do know Jana's been engaging with all of the family organizations to do collaborative agreements with them for this upcoming year, one of whom was Patti through NFADB to figure out what we're going to help each other collaborativety support to continue to elevate family voice and what that looks like. >>Jana: I'll just tag on to Megan to simply say it's more than just sharing the information, it's really risking what might be a little bit scary for you to talk about your role as an educator and the impact of increased family engagement and family voice. Meaningful conversations that you'll grow and develop and so will the family. And I think this is the movement we're trying to do is to go that direction to make it more than just a resource. >>Edgenie: I love all the partnership. I think great things are going to come from that. Margaret posted in the chat: I have been involved in person-centered planning meetings with families and school staff. It's been a wonderful experience to connect. Thank you, Margaret for sharing that. It's so true. Patti, this is Edgenie. Not to put you on the spot, but I believe NFADB has an event coming up that all of our participants may be interested in. Would you care to talk about the Deafblind experience as well as perhaps the registration for FATE? >>Patti: Sure. So this is Patti speaking. So we'll start first with FATE, which is the family advocacy training and education. In the beginning of August we did a webinar of information about our -- what we're calling Phase 2. We did a pilot year last year where we brought together some of our affiliates as well as some of the national family organizations and we did a six-week training followed by six weeks of facilitation to begin to build a national agenda on behalf of our Deafblind community. All of this information can be found on our website. So like any pilot year, we had a great learning curve and we're about to kickoff our Phase 2. I believe it starts September 8. So from the information webinar there are folks that can apply -- and this is not advocacy 101. We ask that the parent leaders come with some training because it's pretty intense. And so I don't have the numbers. Jaqueline Izaguirre and Melanie Knapp, who are the co-chairs of our policy information and education committee -- and Edgenie is a part of that. They're tallying up and going through -- we only have 20 seats available. So that will begin September 8 and I believe run through October 13 with our FATE training for that. And our family journey, our Deafblind event is scheduled for -- okay. I should know this by heart. I know it's October and I know it's on a Thursday. Let me double check. So the 27th -- and that's at 7:30 eastern time, 7:30 to 9:00. And seven families will share their journey and, again, Donia has multiple journeys so Donia's one but we have six other families. Jana and Carol have been helping the families create their stories and, you know, we call this our annual fundraiser but it's an opportunity for families, free of charge. And it's just a nice way to come together. So all of this can be found on our website so please register, become a member. We would love to have you involved. So thanks, Edgenie. >>Edgenie: This is Edgenie. I'll tag on, as Patti has said often. NFADB welcomes professionals being part of the organization and this special event that we have on October 27th is I believe available for professionals as well as families. Please feel free to join us. Make it a family event within your family and come and listen to the families. With that, we're getting close to the end of our time. Are there any other thoughts that our wonderful presentation time would like to share? Of course our participants, please feel free to post your questions, your thoughts in the chat. We'd love to address them. >>Megan: Edgenie, this is Megan speaking. I just wanted to let everybody know that I put the link to the NFADB event that's on October 27th to register. I put it in the chat pod.