DISCLAIMER: Raw, unedited transcript from webinar. No guarantees are made for the accuracy of the content.

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>> Okay let's get started. This is Robbin Bull.  I want to begin by welcoming everybody. I will go through some housekeeping items. As you have experienced the phone lines are on Mute.  The question-and-answer session will occur at the end of the presentation. You can write your questions in the checkbox at any time. It will be monitored throughout the webinar in preparation for the question and answer session. 
>> We want to let you know the webinar is being recorded and archived. We will post it on our website in the next couple of days. I am going to start the recording. 
>> Hello everybody. I am Megan Cote  and I am the family initiative lead at NCDB, I represent on behalf of myself and Mark Schalock  who works at NCDB as the evaluation coordinator. He happens to be lucky enough to be on vacation this week. I want to make sure to let you know, the data that is in the presentation, we are grateful for the effort he has put into this. Will analyze all the information to make sense of it for the network. 
>> I want to let you know the results were broken down into these five areas, background, the second is Child and family needs and strengths, the third is experiences with agencies, programs, and service providers. The fourth is experience and interactions with other families, the last section is local state and national supports. 
>> Let's start with the background. The background focuses on the recruitment of families, the number of responding families, and some demographics of their children. 
>> We would be remiss without first wanting to acknowledge and thank all the different groups who have played a significant role in recruiting the families to participate. We want to thank the state projects, NFADB,  NCDB, and also we want to mention for this, we had English and Spanish versions of the assessment, we also provided paper and pencil versions for those that wanted to print things. We managed to collect 184 results from families and these families responded to at least one or more items in the survey. 
>> This slide highlights the range of ages, I want to point out the vast majority of these children that you're seeing represented are birthed from 21. 167 out of the 184 people have responded which is 91% so 91% of the respondents had kids. Also the distribution of ages were consistent with the overall blind child count, but a little higher on the 3 to 5-year-olds. This provides a broad view of the age and experience and helpful support. 
>> The next slide talks about the fact that we asked people what was the age of the diagnosis of your children's Deaf blindness and 135 out of 182  which is 74% of the kids were identified by age 2 which is a difference from when children are referred to the projects so this is indicative of when they were asked what one was your child diagnosed -- when was your child diagnosed. 
>> The next slide, it talks about the age when they were connected to the project. On the previous slide I pointed out that 74% were identified at age 2 and the slide shows 38% or 50 out of 132 folks that responded to this question said the children were referred to the project by age 2. Also I want to mention this past year 26% of the newly added kids to the count were through H2 so the sample you're seeing, of families, connected with their state project at an earlier age than what is typical. 
>> The next slide talks about additional information of who was referred, it shows was a wide range of ways in which parents were referred to their state project with part C providers and school personnel being the highest group of people that referred families to the project. 
>> The next section we will go through talks about needs and strengths. This focuses on the needs of the children as well as the needs and strengths of families. What are the current top needs you have for your child? That was the question that was asked and most frequent response was communication system, qualified knowledgeable personnel at the local level, social engagement, health, independent living and functional living skills, supports in the home and community, parent training to support their child. There's a pretty good agreement between this list and that was generated through the national needs assessment that we did which ranked communication qualified personnel, family support and training and transition issues as the highest when asked, what they thought were the biggest needs so there's a lot of connection here between those two different surveys. 
>> Next slide when you look across all the needs identified by these parents, we noticed six big ones that emerged, the first was general/cut across and community engagement and supports, home supports, medical and healthcare, and postsecondary adult life and school, what is interesting is that the school related issues are at the bottom of the list in terms of frequency and mention. Medical and house issues and community and social engagement issues being across-the-board when you look at the data, to the extreme. On the slide we talked about the question that was asked was what you most need information about X? This was tallied by order of frequency covers that the talk about was assistive technology usage, they talk about communication methods and instruction, advocacy skills to support my child in school and the community, the impact of vision and hearing loss, helping my child build social skills and friendships, building a network of support for my child, transition to adult life was seventh, and supporting my child with complex medical needs was eight. What's interesting about this, on the assistive technology use category, this was a catchall for what's available and how to get my hands on it and how to use it. When we summarize this category, that's what assistive technology is speaking to is a catchall for what is out there and how you get it. There seems to be a pretty good agreement between this list and that that was generated through the national needs assessment with medical and health issues and community and social engagement were important to the family. There were a lot of adult and postsecondary needs that were identified. 
>> What else do you most need information about? These were the additional things. They talk about things like intervening in school, dealing with challenging behaviors, the life of the child as an adult, dealing with IEPs and assessments,  movement, employment, sibling support, and transition from early intervention to school. 
>> The next one is family strengths. These are things that the family identifies as characteristics of their own families, when asked this question they said things such as our family is a strong team. They were remarking about their ability to be to be adaptable, love humor and faith, knowing and understanding their child, and being consistent, they allow the child freedom to explore, the focus on the strengths and maintain high expectations for their child, they include their child and all family activities, another one that came back was the importance of celebrating success. The key to this one and I was looking at the data, when we see these things as providers we need to be thinking about how we build on the strengths and provide us because if these are things that families are saying, these are keys to the dynamic of the success of the family when we think about how we provide TA and support around building their feelings of success about their child, and their feelings of feeling they have a strong team behind them, and they have a chance to explore and include their children in everything is key. 
>> Continuing with the strengths, when we asked what their skills and abilities work, 102 people responded to this question and they said, taking care of educational and medical needs was a skill they had. They felt confident in advocating for the child, and the ability to find resources, they communicated with their child, and experience as educators, they felt pretty confident with helping teach specific skills about how to interact with the child, and then the ability to have financial support. When asked the question about the development of external supports, 12 people answered this question. They talk about the importance of connecting with other families and having external supports the on their immediate family. 
>> This next section talks about experiences with agencies and service providers. We ask questions about various agencies and service providers families deal with in supporting the child. 
>> This was an overall question about satisfaction with service agencies and programs. Almost all of the respondents had experience working with school districts and work their departments of education about 70% of the respondents had a positive experience. Three quarters of the families have had positive experiences with part C but we noticed that far fewer about 42% have had positive experiences with developmental disabilities. 
>> We have a catchall of other programs, almost 80% of those families who had experiences with the medical system reported they had positive experiences, also experiences with the public health system, the reported they had not been positive experiences, less than half of those families who contacted their state center, had positive experience. Families have found that local state and national programs and agencies that they have been using had really benefited them. 
>> This talks about educational service providers, 162 of those who completed the survey that we sent out, they filled out this question. What we found in this is that the educational personnel these were people that the families had used, 143 of the parents said they had been involved with using a special ed teacher, 126 work with teachers with visually impaired, 120 work with an early intervention teacher, 106 reported having worked with regular education teachers, 105 working with teachers of the Deaf  and hard of hearing and 37 other respondents indicated they had support from a teacher of the Deaf and blind for the child. 
>> We look at related service providers you can see 150 had their child had the benefit of having a speech path 142 of those parents reported their kids had Occupational Therapy, 138 had physical therapy, 104 had a -- had assistance from the school nurse, 33 had interpreter services. When it comes to para-educators, I was surprised by these numbers, 84 reported that their children had services from a parent educator and 46 reported they had support from interveners, and the last data point talks about administrators, 96 reported they had direct interaction with their school administrator and 63 had said they had direct support from the district administrator. 
>> This talks about medical and social service providers, again 162 people responded to this question. 150 reported they had use the services of an audiologist 142 and said they had interactions with her ophthalmologist and 110 with an optometrist, when it came to reporting about general medical professionals, the pediatrician, the physician, and when it came to social service personnel 68 of the 162 respondents said they had use the services of a social worker. 
>> The next section talks about experiences and interactions with other families. It focuses on experiences and interactions with both family groups and other families. 
>> The frequency of interactions with other families, 149 people responded. 74 of them which accounts for almost 50% they never communicate with other families, which was surprising. 53 of the respondents which was 35% communicated one or two times per month. Five of them were 3% said they can indicated three or five times per month, and 17 or 11% communicated more than five times per month with other families. 
>> This next question talks about what ways you prefer to interact. 152 folks responded to this question. Here are some of the samplings, 112 preferred in person interactions, this might be trainings, or meeting up for coffee with another family, it could be a myriad of those type of things, 90 said they preferred private Facebook groups, 69 said they preferred phone calls, 69 preferred texting and of those of you also said they preferred email. 25% preferred sums form -- preferred some form of online communication. And several respondents were not interested in communicating with other families but did not necessarily give a specific -- reason. 
>> This talks about experiences and interactions with other families. 132 responded, 69 indicated there was a group in the state. 40 indicated they were active in their state parent group. 28 indicated that there was not a parent group. 46 did not know or did not respond. 13 indicated that they were active in state and/or national advocacy efforts. 
>> The next section is supports. This focuses on family supports at the local, state, and national levels. 
>> When we talk about decision-making supports, there were 156 folks that responded. The question talk about who the parents rely on in making decisions. What was the overall ranking? Everybody relied on themselves, their own knowledge about the child and reading and self-study. The second highest were experts, they said service providers like teachers, physicians, etc. Five people said state project personnel, trainings and workshops, that was another listed, and watching online videos. That was another way in which parents rely on getting information. The third category was other families, they asked other families of the parent of a child, and local or national parent groups. That was seven. 
>> There was a broad category for that provided the most helpful support. 112 Oaks responded. -- 112 people responded. Number one was other families and then state project came in second, followed by charge syndrome foundation, NFADB,  HKNC  and the Usher syndrome foundation. 
>> What has been the most helpful in terms of specific support, the family said connections to other families. Conferences and parent weekends. Facebook groups. Resources and information used in the home, community and school. One on one assistance. Advocacy for support in obtaining services in the school and in the community. 
>> When we asked what was the most helpful in terms of the supports that they got, they ranked as number one, parent workshops/weekends. The second was one on one support to their family, and then access to resources and information was 25%. The fourth thing they said was TA to the teams in the school. That was also very helpful. 
>> This is another broad section of additional comments. They said they need more support groups for parents to connect and share. They need help navigating state programs and agencies especially adult/community service, they need qualified personnel in their state, they need more support from national organizations and projects. Resources need to be easier to find, and they said thank you for your supports/activities. 
>> Those other pieces of data that came about. Those referred to state project mean they asked for services or just added to the senses? 
>> When we said they referred to the project, when were the parents connected to having their child added to the project child count or at least being given the context information. When did they make the initial connection? 
>> For any family engagement staff on this webinar what you think it was such a drop in responses on the question of external versus internal supports? 
>> My overall thought is it was confusing to me to be honest. There was a little bit of disparity about parent said they don't want to be connected to other families and yet some of the responses were the highest on saying the way they felt that was supported was by having face to face interactions with other families. It was a strange thought about external versus internal support. The connection with families and agencies, they want those connections. We were baffled by that as well.
>> I am wondering how was the question posed? I wonder if families understood the question when you use the term, external support. That's the first thing that comes to mind. If the question was understood. 
>> That's a great point. I'm not really sure about the clarity I can ask Mark about that. Maybe they were confused. 
>> I will look into that and get back to you.
>> Any other thoughts? 
>> As a parent, I have to say I think sometimes as we are overwhelmed and searching and almost trying to find the exact resource and support I think sometimes we alienate ourselves because we are on this journey, until we find that, that's when you can begin to expand and you find there is a network and where your fitting in and what resources may be appropriate for your child. I wonder if it is just a little bit in the beginning as we all kind of search for the exact and then it opens up if that makes sense. 
>> That's a great point. Sometimes parents have to have a laser focus on exactly the question that they have and then they are focused on that question and the world kind of opens up. 
>> For those that cannot see the chat box, it makes sense. 
>> Do you know how many of the respondents were from rural areas, cities and suburbs? Wonder if more from rural areas may not have the same amount of support or support from local family groups. 
>> When we build the survey, we did not have parents specify their name and address and state. We did not ask where they were from so I'm able to tell you for sure how many of them were from Rural parts  that would have been an interesting piece of data I'm sorry to say, we do not have that for you. What does -- we wanted it to be confidential. 
>> Any other questions? Any thoughts? 
>> That's a good point. Family supports that provide effective support for families for human -- for whom English isn't their primary language. That's a good point. Something else I wanted to mention, of the parents that responded to the survey, over half of them knew of a group in their state. That's a great thing that a lot of them were aware and were connected to the fact that there might be a group in their state. I thought that was a good finding. It means we are doing a good job. We want to make sure that parents have a way to connect. 
>> As a parent I found that I sometimes heard the name of external support but due to time I did not get involved. I'm getting more involved lately and I am pleased to find some groups but it's still hard to know what groups are worth my time. 
>> That is very valuable. That is something that you should think about when you think about messaging the families to make sure we know the most important agency locally that families can connect to for support. 
>> Any other thoughts about the data? Any questions? 
>> We found it seems like that while parents want support from other families, they rely less on their advice and input in making decisions about their own child so it's like they want that connection so they do not feel isolated but they tended to still trust their own instincts when they were making their own decisions for the child. It was an interesting thing to think about. They want connection but they still at the end of the day will rely on their own got and knowledge about their own child. It is the emotional support that they appreciate the most. 
>> I suspect hearing from other parents helps them in their decision-making process. 
>> It's interesting that with the age of technology advancing, as providers thinking about they like connections through Facebook groups, and quick ways to have immediate interaction, thinking about that and how we give that information, that is also interesting. 
>> It will be a huge help as we write our next grant if there is another cycle, so thank you for this contribution. 
>> It is our pleasure. 
>> This is very helpful to the family groups so we know where to focus. It says very loudly where they are going to be different groups and resources that are going to be a fit, as unique as our children are, the same statement goes for the families and so how important the partnership may be that if there is a family group that doesn't have exactly what that need might be, that partnership to say here is the charge foundation or we have a connection here at a parent center, it's very loud and clear as we continue the strong partnerships across the network, it's going to enhance the family and the engagement. 
>> I agree with you. It will be key as we strategically move forward with planning to think about how to make sure parents are clear about where they can engage and in what mode engagement is being offered. It will depend on the family to figure out how much we can hope for. You can tell from the survey that they definitely want to be connected. We are still being assured that there will be another grant cycle and yes this information will help us. 
>> Where can we access the results? Is it posted on the website? 
>> After the webinar is over, the recording will be archived and we will have the PowerPoint for you to access and download your mark will be working on writing a narrative that would be able to share. 
>> The link to the webinar archive is in the chat box. It will be up in the next few days. 
>> Any other thoughts? 
>> It's interesting that consistent with the other items, most parents don't find workshops offered by their projects really helpful. Roughly the same percentage of parents also find the one on one support that you provide and the resources you provide, extremely helpful. So what you are doing is making an impact on the support. The families really appreciate it. 
>> When I look at the list from family needs, starting with assistive technology, communication, the module covers each one of those topics. In our work getting parents involved with the module, the information is there for those that have participated in the module so it is interesting to me that there's an entire module on practically every single one of the topics that were mentioned. 
>> You are right. In my mind, what that means is that we need to think about how parents are receiving the information, if asking them to enroll to take the modules, maybe we need to work harder to figure out ways to allow them in or feel comfortable to get into them or think about how we use them in difference sections. 
>> It's like that analogy of ripples in a pond that more parent support groups were centers or whatever know what other supports are out there in different formats, then they can hopefully also help families find the right fit because they also know what is out there. So we all need to keep connecting and sharing our resources. 
>> Great point. 
>> It is interesting with this slide up, and being involved with the engagement, and our meetings, the work I do with NFADB and  as I look at this list I'm thinking, there's a subgroup working under the family engagement coordinators, with assistive technology, and with communication. Trying to build relationships with families. We just had a meeting last night and we had a great discussion on transition to adulthood. So many of these things are being addressed so I come back to the partnership as we are working hard that can be shared across the board. It shows the partnership which as a parent, the networking and seeing the professionals are very approachable, parents want to continue to be educated and learn and pass on the knowledge and grow a stronger network, it's amazing looking at this one slide saying, we are in the motions now. 
>> Thank you I agree. 
>> It's a good sign that the family engagement coordinators on the projects are doing a subgroup to hit these specific needs because what that means is you are well connected to understanding what is missing in terms of support and what additional things we need to focus on. 
>> Anything else? 
>> More living proof about how your connecting. -- You are connecting. 
>> This provided some great input. Thank you for sharing. 
>> Any other questions? Is there anything that surprises you? 
>> It is nice to see more families and you do not have any identification as the states but working with the national organization, NFADB , I want to know how we could do better helping get this information out to more families. A lot of good stuff has happened but we need to figure out a way to keep getting information out. 
>> I agree. 
>> Sometimes it takes more than one mentioning something before it clicks. So making sure the information is getting out and we hit all the parents they need to hear it is a good thing. 
>> 69% were satisfied with the contact with schools and departments of education. 
>> It would be nice to have it higher. 
>> Correlates back to some of the data that we talked about related to the service providers, there were few that listed they had a teacher of the Deaf  line and I was surprised by the high number they had listed. 
>> We just have a few minutes left. Any other questions? Any thoughts? 
>> What will come next, Mark will be pulling together a report that we can share and you can get access to these PowerPoint slides and the recording and we will have more information coming out about the project survey that we sent out to you. That is coming as well. 
>> We're all in this together. The data gives us the proof as where we need to focus. 
>> I want to thank Mark for pulling all of this together. There's a lot of data to look at. 
>> Thank you for helping us get the survey to the families. Thank you for all of your help. I look forward to continuing to discuss things so we can make some informed plans moving forward. We want to enhance what we do for families. I hope you have a great rest of the day. Thank you for joining us and taking time to learn about all the data. We will connect with you again soon. Have a great day everybody. 
>> Thank you. 
>> [ Event concluded ]