Event ID: 2088585
Event Started: 2/7/2013 1:48:35 PM ET
Please stand by for realtime captions.
If folks could type in so we get a sense of who is here.
Now I hear furious typing.
Welcome everybody. To begin with, before we start this webinar and the introductions, a couple of housekeeping issues. I will be meeting everybody's phone lines and you will be able to unmute your phones during question-and-answer time. With star six. During the introduction, we will talk a little but more about the question-and-answer process. We do ask that everybody keeps their phone muted so we can keep the background noise to a minimum and then everybody should be able to hear. This meeting will also be recorded, and made public, so please be aware of that when you type information into the chat pod. Anything you put in there will be public information. Be aware of anything confidential that you would not want others to see. And with that, I'm going to mute the phones and then I will begin the recording. You will hear a series of messages that occur as that happens.
It doesn't look like it muted everybody's phones. Yes, there it went. Okay.
Can you hear me?
Wonderful. We will get started. Welcome everybody. It is great to have everybody here today. Welcome to the national family Association for death/blind webinar in collaboration with the national consortia Asian -- Consortium. My name is Sherry Stanger and I'm a current there's any past President of NFADB. I've been on the board for 14 and a half years, and we are very excited to have Morgan Casey here -- Maureen Casey here today. To discuss social media to increase family leadership. NFADB's mission is to empower the voices of families of individuals who are deaf/blind and advocate for their unique needs. The family is the first circle of support for an individual who is deaf/blind and we wish to extend that first circle of support to include those on the same journey. We see the use of social media as being an effective tool to reach this end. We have people attending this webinar from different backgrounds. Where parents, professionals in the field of deaf blindness and training and information centers. We are all here to learn and this is a great opportunity for our organization to let you know what we can offer to families and to those that serve families. NFADB is the only national organization created by families with members who are deaf/blind to support families who are -- have members that are deaf/blind. We provide information, resources, and referral services, advocate for all families of persons who are deaf/blind of any age, provide training and support and collaborate with the state deaf/blind projects and -- NCDB, coalitions and state family organizations. We are a unified voice that supports and advocates for national policies and an active member of the national coalition on deaf blindness. We offer information through a newsletter, website, listserv and Facebook are. We also have an affiliate program with state family organizations to grow our network of information, advocacy, and support. And as ADB has a strong commitment to the empowerment of families. Collaborations with professional organizations such as NCDB further enhance this commitment to those who care for someone who is deaf/blind whether it is on a personal level, or a professional level. And as ADB believes that individuals who are deaf blind our valued members of their community and should have the same opportunities and choices as others in their community. NSADB's values mission drives our efforts. We welcome our members and those who are new to the community and encourage you to learn more about NSADB. We welcome your support and membership. I welcome you again, and I know that you will find this webinar very informative. Thank you for joining us today. I will put our contact information in the chat box later on. I will now him this over to Kathy McNulty from the national Consortium on deaf blindness.
Thanks. As Sherry mentioned, I work for the national Consortium on deaf blindness, NCDB, and I would also like to welcome you to today's webinar. It's one that I have been looking forward to for many weeks and months. Looking through the attendee box, I am seeing some new names. I am very happy and excited about that. I thought I would just take a quick minute for those of you who are not too familiar with NCDB and give you a small infomercial. NCDB is a national technical assistance and dissemination center for children and youth who are deaf/blind. We are funded by the US Department of education office of special education projects. And we partner with state deaf/blind projects brought the United States to work with SCA's and L EA's to provide appropriate services and evidence -based practices. For children, birth through 21 who are deaf/blind. We also partner with state deaf/blind projects as well as national parent organizations to really work with families to increase their capacity to network and make those connections and relationships, as well as acquire those skills that they need to effectively advocate for their child. This webinar is very exciting for several reasons for those of us on NCDB because the topic very much reflects two major areas that NCDB has been working on for the past 18 months. One of those areas is technology, and as a national TA project we have been looking at how can technology help us? How can it help us deliver technical assistance and build that capacity? That is one area that we have been focusing very hard on. And the other one, we have always had a very long-standing commitment to work and support families. And really promote family engagement. And I think this webinar is really going to capture those two areas very well. And certainly, and very importantly, we are really very happy to be cosponsoring this webinar with NSADB. We have enjoyed a very strong partnership with the national family Association for many years. And I think it's safe to say we really have a shared commitment to offer information and resources to anyone involved in the education of a child who is deaf/blind. As Jerry mentioned, we have Maureen Casey joining us today and she is a wonderful presenter. Maureen is a family representative with the interagency coordinating Council for infants and toddlers in Arizona. She is a mother of a child with a disability, but as we have gotten to know each other, Maureen has shared with me that her journey as an advocate began when her son was an infant receiving early identification services in New York. And somewhere along this journey, Maureen recognized how social media to support her advocacy efforts as well as the potential it represented for so many other families who are striving and working to be as effective as they can to advocate for their child. She presents on this frequently, often, in Arizona, and most recently conducted a national webinar for the national clearinghouse on disabilities and she also presented at the OSC Pete leadership conference this past summer in Washington DC. Whether you are joining us today as an individual parent looking to reach out and find another parent and do some networking, if you are a parent leader of an organization or involved on a task force or workgroup or if you are a professional, someone who is working on a TA project that works very closely with parents, I think you are going to find really very valuable information in Maureen's message today. With that, I am going to hand this over to Maureen and take two more seconds to quickly remind you, be careful what you put in the chat box because it will be there forever. Try to limit those questions and comments as Maureen goes through her presentation and Sherry and I will do our best to make sure that we make sure that your questions are responded to. With that, Maureen, I am going to hand this over to you.
Things Kathy, I am so excited to be here today and I'm so excited to see all of you here as well. I ask people to put in the chat box their name and where they are from and their role, because I recognize that we will have both families who are here simply as family advocates but we will also have some family members who have become professionals and we will have professionals who support family members. And I'm really excited to talk about how we can use social media to facilitate family leadership. We know that families are on social media sites. And in fact, I'm going to start by giving you the lay of the land. Randy and I have -- are going to load up a YouTube video. It's not as much fun the way we are going to do it because we will not have the audio, but we will load the Lincoln so you can watch the whole thing. I would like you to see a little snippet so you can see why I think social media is really important for the work that we do. [ Indiscernible - video playing ]
Maureen, I think first you need to share the desktop that you have. If you look at the share pod and then choose share my desktop. Click on share my screen. You can go ahead and play your YouTube, and full-screen now.
There we go. Randy, I am having a little technical difficulty here.
It does not want to play.
It does not want to play. I will give it one more try. Here we go. [ Indiscernible - video playing ] I am going to pause this. There is a lot more of this. To that presentation. Randy, can you get it to -- now I have to get out of my screen. When we did this we didn't have as many people on here if we could stop sharing, sorry about that. The point of the video, and there is a lot more, is just that social media has become so ingrained in our culture that what is happening online is impacting what is happening off-line. What I found shocking is to see that 92% of two -year-olds have a digital footprint. Which means that their parents are sharing information about them online. Not that a two -year-old is sharing online, that there is information out there. And since that is happening, we need as people who are supporting other families, supporting ourselves, we need to be aware of what is out there and what are folks using. I have put together a really intensive handout that you can download that goes through all the different types of platforms that are out there. It's not exhaustive, but I think it is a place to start. So that we understand when we say social media, we are talking blogs, social networking sites like Facebook and LinkedIn and yelp, video sharing like YouTube, microblogging which is twitter, tumbler, snap chat. Wikis, where people are sharing information and creating their own content. Social bookmarking, forums, and photo sharing. There is a lot out there. But what is interesting is about 95% of the people who are online want to get in and get out. Get some tips and tricks and get out. About 5% are actually conversing and actively creating things. Randy, can you put that URL in there so people can watch the video themselves?
Yes I will, I am collecting it right now.
Thank you. Why you social media? First of all, a great place to get information, support, to share similar experiences because location is no barrier. Being online is always available, it doesn't matter if you are here in the United dates, you can converse with somebody who is in Europe or Australia the wonderful thing is you can chronicle change over time. I put this thing "-right-double-quote, it is free, many of those sites are free because they're paid for advertising. We need to be aware of what that means by free. That there are cost to using these sites even if we're not necessarily paying for it the site straight away to access it. The cost of having ADSL or cable line or if we're using our smart phone to access it. The main thing is that there has been this incredible shift to using smart phones. More families have access to smart phones than ever before. Randy has shared that URL. What do families need? What they need is help evaluating the information that they find. You can type in the words deaf/blind, you can find tons of sites but just because you find tons of sites, that's not necessarily true that you are going to find sites that have information that you need or well lead you where you need to get to go. Families need to know how to do a quick search, what words do they need to use, and where to find a. If they need navigating official sites. Sometimes given our need to have -- to be compliant with 508 and 504, sometimes our sites are difficult for people to navigate. They also may need help creating an action plan. Now I have all this information, what am I going to do with it and where am I going to go? What do families that? What I find interesting is that is where they are learning their information, on social media sites. That is where they are going. They are immediately typing into a search engine the name of the diagnoses their child has been given, they're finding information about that and then they are connecting to other people out there. I encourage those of us who are working for official sites and those of us who are family advocate to really be social. To share information that is out there. To repurpose, repackage, reuse, re-share. Recycle what is out there. Because we can't -- what I hear from families is I had no idea that there was this site, I didn't know there was a site that told me how to learn more about the process. If we can get the information out to folks and say there is information out there, sometimes the information that is already on the existing site is very technical and uses a lot of legal terms. And that is fine. But if we can then repurpose it and put it in plain language for folks or give them examples of how we have had a picked -- particular experience and here's the link back to an official site that shows you how I used that information, if we can put it into other languages, that is always much more helpful for families. But we will always acknowledge the original sources. I was make sure that you are letting people know where you are originally got it, even if you have repackaged it and given it a new -- some new information. If you're going to be online, one of the key things is to be authentic. While this cutie pie looks cute with her mustache and her beau, she is not really being authentic. Being honest about your experiences, if you don't know something, say so. Modeling how we want folks to think about disabilities, that we want them to think from a straight, safe approach. We would like them to use people first language when they are talking about disabilities. Helping him to set ground rules. Explain the family education rights and privacy act. Explain how that impacts families on the ability of provider agencies to share information out to folks, explain if you are being funded by the federal government you are probably saving some records. If you're using a social media site with federal dollars, you are retaining records. Let them know. At the start of this webinar Randy let everyone know we're going to record this webinar and cap he said don't forget that means whatever you put in the chat will be there forever. Explain that to families. Explain to them that even if they put something up on social media and I take it back down, it is probably still up there. Talk to them about how to use the message features, the private chat features of different sites. So that they can share their questions. Set expectations for the frequency of your own post. If you are running an organization site you want to make sure the people know how frequently you're going to post. If you start your site and post every 20 minutes for the first week and then don't get back on until next week, people are going to be upset. But people will understand if you're going to be posting two times a week, they will get used to that and they will see that as what to expect. And that's how you can model how to post. And how to get across to folks that we are using straight face language and we are using people first language.
Help families protect their privacy. Educate families about what happens in social media. This picture of this little darling, it's a child with a disability who is in her Easter bunny suit inside Aisling and the parents thought it was beautiful and sent it into the Ellen show. Once you do that unfortunately, it becomes part of the public domain. Somehow it ended up on a site called parent fails .com. While that parent and the other members of her parent advocacy group thought this was a beautiful picture, others started making it into a meme, they put other words around it. Taking a picture and adding other text content to it and sending it back out. And the parent was quite upset and in fact, I did ask this parent if I had permission to use it and to explain what had happened and she said oh my goodness, you are the first person to ever ask me if you could use my child's picture. And I know that it has been seen by millions of people. Educate families about it. Challenge families to think about the fact that when we as families are posting on the sites, we are posting on behalf of our children. They need to remember we are not just posting about our own experience, we are posting about that child's experience. Recently, a parent after the Newtown shooting wrote a blog post and entitled it I am [ Indiscernible ] mother. Unfortunately, she was definitely trying to be a provocative or, get her story out and to have people focus on the fact that mental health is part of this whole issue. But the parent wasn't necessarily prepared for what happened next which was that people started mining her blog and looking through other things that she had said about her child. People called her out on the fact that she wasn't talking about her own experience I'm a she was talking about a minor child's experience. It is important to let people know what the possible pros and cons are to doing that. Families often set up these private sites on Facebook and they share intimate information or they use listserv on Yahoo. They need to be aware that just because everybody in the group has agreed to something doesn't mean that what they say on that site stays on that site. People can take screenshots and cut and paste and share that information. It is important that we educate families thinking about that before they take that next step. Does anybody have any questions about that so far? You can use the raise your hand tool. I will move on.
When we are encountering this kind of thing, I think it's important that we gently correct. That we point people to evidence -based research. A family member may be posting about their own experience. And their experience may be one that not everybody shares. And that is fine. But if you want to point families then two other evidence -based research and say we have found that this works and here is a link to some official sites that talk about that. Point them to those reputable sources. But don't get personal. It never helps to get personal and attack them. It will turn not only that person off but it may turn off the whole group. It's the same as if you were standing in front of an auditorium of folks. When you are online, you are in front of an auditorium of folks and it's important that people are aware of that. As Applebee's learned this week, did anybody see the Applebee's thing recently with the waitress taking a picture of the receipt? What she did may or may not have violated their policy. There were ways in which she could have done it without letting people know who had done it or that it was done at an Applebee's but what happened, the Applebee's Facebook site ended up getting bombarded with responses to the franchises response to the waitress. Yes, she got fired. In our case, families don't get fired but they can have real life interactions as a result of sharing. If a family member sharing on a site and they have an expense with a teacher and their naming a teacher, someone else might see that and take a picture. It's important to remind families just like what we're teaching them how to share their story publicly at a public hearing, it is helpful not to get personal and talk about particular people, to talk about people's roles and just remember that the story may get repeated. That they need to be honest about their experiences, not exaggerate. Because there can be repercussions. It's important that when we are on the site that we remember that there is a difference between our personal site and our professional site. If I have a Facebook site and my own Facebook account, then I'm probably just sharing what I'm doing and thinking, connecting with my friends and relatives, I might experience -- share my expenses a milestones and have a newsfeed. If I have a professional site for let's say [ Indiscernible ], I am interacting with current or future families and professionals. We are trying to establish my organization as an expert in the field and trying to spread my organization's mission. Without the expense of a big advertising budget and buying ad time. And I have a fan page wall where people can comment. There are different tones we need to use. If I'm writing as a charge syndrome, I will not use the pronoun I, because nobody knows who I is. I will use we, and think about the things that I post. I might not post on my charge syndrome site that I thought that it was an outrage what happened during the fourth quarter of the 40 Niners thing on Super Bowl Sunday because I might not -- it might not fly with my fans. My fan site, I might ask people if they were watching the Super Bowl and how did they include their child with a disability in their Super Bowl festivities. And that might be a great way to jump off of something that's happening in people's lives and help them to think about -- how did we have that whole family experience on that day as part of a national conversation using my fan site.
If you are ready and you are going to jump into using more social media, I say start with a simple plan. Number one, the handout that I've included, I have all of the different sites. You do not have to jump in and say I'm going to have a Facebook site, twitter site, YouTube site and a wiki page all on the same day. Start slowly and build on it. Decide what you're going to use and decide on a name for your site. It might be very simple, might be the charge syndrome or it might be charging through disability. Something like that. Set some sort of a calendar and think about what is realistic for your community. Is one blog posting a month realistic? If we're using Facebook, are we going to do it every day or are we going to do it 20 times a day? You can use your sites to post important event date. And activities. That you know are happening in your city, whether that is sure local community or nationally. Also, go out and like other pages and other content sites of people who are doing similar things. If you are on YouTube, you will follow a couple of other channels. If you are on Facebook you will like other Facebook pages of folks were doing things within the disability community, within the education community or within your local community. Really brand. As you can see on the slide, we have a picture from the group -- groups blog and Facebook. Whether you are on there Facebook site, blog or their website you can tell that this is the EIFA or Early Intervention Family Alliance. They have clearly the used a set color scheme, they're using a set logo and putting it all on their different sites. So when people see it people will say hey that is EIFA, I remember that. They are linking between their different sites. It's important you help families to take action and that you give them an action plan. I like this from the Utah family voices, they were letting folks know about an appropriations committee. What I love about what they have on here is they have where it is, what time to arrive, how much time folks will be given to give their information, who the contact person is, and at the bottom they say don't forget to bring copies and they have to be three-goal plunged and arrive early so you have enough time to find parking. It gives families the steps they need to take if they want to get involved and clearly, if a family saw the sunset I want to get involved but I don't know much -- what I might want to put in my testimony, they can comment on the site or send them a private message. Here's another Facebook site where it was trying to let folks know about a meeting. Now that it is more integrated with some of the map sites -- and Utah could have done this, they could have put a link to direction so people could put in the directions and get those to get them there. One of the other things about being social is expanding the reach of other groups. One of the things that they Early Intervention Family Alliance does a lot of is encouraging people to get involved with some of the technical assistance centers. Here they have a posting encouraging family leaders to present at the workshop. And so not only did we link to the leadership contest -- conference but we also spelled out some specifics on how do you present. That may be -- a family member may say I have some great concepts I want to present but I don't know the first thing about how I propose a workshop. What is involved in that? How do I make sure the workshop meets the expectation of the workshop planner? And so providing a blog posting that walks folks through that step and linking them back to the actual site is helpful. No questions? How about a little hand wave? Can folks give me and agree that they agree things are moving along and they understand what is going on? I see people typing. You can hand wave by going up at the top, it's a little person and you give it a little click and it will show that you agree. That's all, I just wanted to check, I wasn't sure if I was going to fast. I am a New Yorker so I tend to talk really fast. All right, fabulous. We talked a little bit about using the blog postings. That is often a great way -- blog postings for a lot of us who are really used to using text, a blog is a good way to start. Because we're used to writing a lot. But I will tell you that I were 20 somethings are much more into posting quick videos, they like tweeting. We just released sure content, much shorter content. I think it's helpful to actually use content across these different sites and so start with a blog posting which is a longer form. We use this as a way to let folks know -- to help family leaders. One of the ways to help family leaders to share their experiences is to ask them to get a blog post. Asked them to write something about their experience. We have parents tell about going to one of the OSEP conferences and what it was like. She talked about the experience of meeting other families and also some of the nitty-gritty things of going to a conference. If a family member has never gone to a conference, they may not know that most of the folks are in professional dress. And also when you go to these conferences you have to make sure that you are wearing something that is summary but have a sweater as well. It could be 80 degrees in the room or 62 degrees in the room. She also talked about the importance of making sure you have cash on hand to give to the taxi driver when you arrive at the airport. Lots of different types of information. And it was a great way to give this family leaner -- leader and experience of sharing across our community and to get her comfortable with using social media and getting out there.
This is a cool one. I talked a lot about Facebook and the reason I talk a lot about Facebook and I am casual about Facebook is not necessarily because I like it up because it is where everybody is. It is the place where people are. It is amazing how many people are on Facebook and are using Facebook. And you can use Facebook without being on Facebook. I know that's often a question. When people are working for PGI's or working for state government or County government sites. They say I am not allowed to be on Facebook. You can set up a Facebook page, if you scroll down to the bottom of the opening page, it says you can set up one for a business or an organization or group without actually being on Facebook. And so one thing that folks who haven't been on Facebook aren't aware of is when you have a Facebook page, that's a page where you don't have to be friends with folks but you can post and you can have control of Facebook so you know who is sharing and what they are sharing. I think it's a great way to get family leaders involved. It used to be that once you created a Facebook page and you let other people be managers. Everybody has the same controls over the page. And in fact, sometimes there would be a little group and they would take over the page because they had been given permission. Facebook has recognize now that there might be different levels of permissions that people I have. You might have the manager and the manager can do both at it the Facebook page and decide on who is going to have a role. They can create post, respond to and delete comments, they can send messages, create ads, and view insights or the data. You can also have a content trainer and that person is not allowed to add other people as managers. The moderator might just be able to respond to a comment or send messages. And advertiser might only be able to look through data and create ads. And then insight analyst is just looking at the data. This is a good way to start out. To ask family leaders to get involved, you can save would you like to send messages and you can be a moderator with our page and you can respond to and delete comments. And let family members start to help you to get the word out about different events that you are having, to share information. But of course, you're going to do that by energizing and interacting with the folks on your page. You might use #Hashtags. If you will jump on Twitter, the first thing, if you have used Twitter, you will know that in the Twitter page I've shown, this person has an egg. The first -- what that tell us me is this person does not really know how to use Twitter yet. An egg means they are a newbie. That is Twitter's way of people know that they are a newbie. The first thing you have to do is set up a profile and that has a picture of yourself or your organization's logo. But because there's so much information on Twitter, the Twitter user created these things called #Hashtags. I have a bunch of 14 -year-olds in my carpool who use #Hashtags for everything. They #Hashtags homework, or they #Hashtags school. #Hashtags or that with a word is a way that you can search and only find the things you're looking for. You might say that the chart syndrome is going to have a chat on Twitter on Tuesday from 6:00 to 8:00 Eastern time and they will use the #Hashtags charge. First they will check to see if anybody else is using that #Hashtags. Because it will take up room in your Twitter feed and you only have 140 characters. You don't want so much space taken up with your #Hashtags. You do want people to build to find it. There are no applications, apps, I've explained this this in my handout where you can punch in the #Hashtags that you want to follow and find all the postings about something over a period of time. So you can go back later. Just like the chat, in a webinar I'm a it can move very fast. The chat is a Twitter conversation, moves wicked fast. And for those of us who might enlarge the screen or look at it more slowly, it is helpful to use an app like [ Indiscernible ] which allows you to save the chat and look through it over time. And you can also then -- some groups will save it and share it so that it can start a new conversation.
What is wonderful is as more folks have gotten onto the bandwagon of using social media, they're also using national PR campaigns. Last year there was a PR campaign around birth to five activities. And their #Hashtag was B-uppercase-letter 25. As an organization -- it was concerned with families who are involved in policy around part C or early intervention. The early intervention alliance jumped on that PR campaign and really added their own -- using their #Hashtag then try to expand the conversation to make sure that conversations around family leadership and around [ Indiscernible ] were also in the conversation. YouTube. I was shocked, I spent a lot of time over the last week looking at some of the data. I think that this is a place that we are not really capturing well as a community, as a disability community. I think there are tons of videos out there. And just like Google and searching, this is a place that families need assistance. There are lots of official sites out there. Add .gov has tons of videos. All of the TA sites have videos. But I don't think that we as a community are doing a good job in sharing this and making sure that regular families on social media are accessing these sites. One of the things that I worked with the [ Indiscernible ] to do is: Videos and make playlists. We have them organized by playlist. We had one that is just around technology. Another one that is family to family. We had a playlist on training videos that we filed. And then what we do is each month, as you see, we have a video shot there last month. We are featuring a video that I had done for my state. This month we're featuring a video that parents and professionals did the Massachusetts around family surveys. And the importance of family surveys. I think this is a place that is ripe where we can share things. The other thing that I know from working with families is that families are taking videos of their children and uploading them. Again, I would say I think that is wonderful, I would work with families to remind them that once it's there, it's their. Once you upload something to YouTube, you really can't strip it down because people will have cashed it to their computers and they have those videos. On the flip side, one of the wonderful things I've seen is I have seen families using this as a way when a family member says we have been trying something with our child or we have this new piece of equipment, has anybody else used it? And another family will snap a video with their phone of there kiddo using that Walker, whatever or just a video of the child talking about what they thought about it, and shared on YouTube and re-share it. I know in the old days we used to send VHS tapes to one another and their was an expense. Now it is YouTube and it is practically free. So families are doing it. I think we need to help them to think through the ramifications of it but I also think that we have tons of videos already out there. We don't necessarily need to create new videos. We need to let people know that they are out there. Pacer, [ Indiscernible ], I have links for all of them in the handout. They have great videos out there. And I know you guys do to. I think we need to get them out further to families. This I had to share because Pinterest has just exploded as a side. The idea behind Pinterest is it was a bulletin board site where you would -- like a regular bulletin board where you put design ideas and maybe you want to redo your liver and worm and you say does is paint color go with that chance or at this sofa that I'm keeping just think about what you pin it to a board. This is an on -- online way of doing it. Pinterest has become a site for young women. Young women with children. And they are pinning all kinds of stuff. When I started playing with Pinterest about a year ago, I thought to myself this is really a good site for early intervention? My girlfriends who are into and designs and refurbishing and recycling furniture were using it. And they had encouraged me to get on and I said I don't know, I don't think this is really a site for intervention. I have hundreds of followers and I have boards for gross motor, fine motor, visual impairment, hearing impairment, assistive technology, and a whole page just for iPad apps. I am not doing any of the pinning anymore. I now have other people pinning on my page for me. They find stuff and they pin it to my board. And then other people share. The idea is to share things. It is amazing the things you can't -- some of these gals are really super crafty, but as somebody who is doing early intervention stuff and focused on part C, I know that I have to be active and involved on-site where young parents are going to be. Parents of young children. This is the site that folks are on all over the place. Again, I have included some places where you can get started if you want to jump into the Pinterest. I will warn you, like Alice in Wonderland, you make it sucks down there. You have been warned.
We find the sites you have to bookmark them. Hugh have to bookmark them, use different sites and there are tons of bookmarking sites. Here I have delicious but there is day, read it, there are all kinds of different places. Jessica is sharing that [ Indiscernible ] Pinterest page is in process. That's a great one. I included this in my handout, as we start to find all these things and we want to share them, it's important that you also find ways to easily share them. I would suggest one of the apps that I really like is at this. You can put add this on your website and you can also add it to your own personal browser. So you are sharing things that you are fighting on the web. The e-mail or Facebook or YouTube or Pinterest, you can use your ad there's site to quickly add things. I also like to bookmark it, a site like delicious so I can go back and find it later as well. John Harding is one of the folks that helps with the wiki at CoP. That's a great one. We encourage people to join. A community of practice, there are lots of those to get involved in. The added this which is in the handout, it is an application that you can put on your website. If you have -- they can put the Add This button so people could find it on their site and you can also add it to your own personal browser. You can add a button to your browser and that way when you are on a site you can quickly share it to Facebook or Twitter or any of those thousands of sites that you might be using. I would encourage people -- I am trying to give you a big flavor of why I think getting involved in the Internet and using social media is important. I would encourage you to join different communities of practice. And on the last slide, John Harding is somebody who works on the wiki CoP. The TA network has a community of practice. I would absolutely go to the national dissemination Center. They have tips and tools for disseminators. A whole page called steal this. They have a toolkit on how to set up guidelines for using your Facebook and social media sites so you are educating families about how they might do that. And I really -- if you walk away with anything, I would say start tomorrow and build. Take a look at the handouts. And play around with them. Partner with one another. And be social and share. I think I've answered any questions that were in the chat but I would like to open it up for questions.
This is Kathy. While folks are thinking of questions, I think Barbara Purvis had ridden the checkbox this is terrific but it will take a while to digest a lot of it. I was thinking of one or two questions and maybe that would give some folks -- really think of a question for you. The first one was in your work, I am one of those people, I love concrete examples. It helps me to grasp something new. In your work in Arizona with your parents and early identification, you have brought us through a lot of these possibilities but what are your go to tools? What you really rely on when you really want to work with your parents in Arizona. What are those really go to tools?
One of the things is using the existing sites. Currently our state's website is a little clunky. But it has some great information. And our state has a technical assistance site that has videos up. About different training videos. My go to thing is then to use Facebook and Twitter to re-share that. And I would have to say I am probably -- I use all the different ways because I don't think that you can say -- you can't move everything to social media. I am not saying give up on paper mailing. For some people that is the only way they can receive information. But I will e-mail links and then share it via Facebook and encourage people to go to the state's website. I will try to get a conversation going with folks. Right now people in our state are going through a big change in the way in which we provide services. One of the things that we have been doing is been using these different Facebook sites to share information. I also then well ask other groups, either formally or informally. I will ask some coalitions -- they have a robust site. And I will say we are going to be sharing something and can you post it to your site? They will do that and it is like the old Breck commercial. I told someone who told someone and it gets passed around faster. Don is asking about this creating a nonpersonal Facebook account. If you log out of Facebook and you are not logged in as a person. At the bottom of the page on the front page of Facebook, if you'd typed it into your browser, at the very bottom, you'll see anything that says not on Facebook? Want to create a page for an organization? That's where you would go. You would use an e-mail address not associated with your own Facebook page. I use my name on Facebook as Maureen Casey. I would use another e-mail address to access that account. My suggestion for folks to think about is you want to use -- if you are an organization you want to use an e-mail address that you have control over, so that if staff leaves it is not a personal e-mail address but rather an e-mail address that the organization has control over. Unfortunately you do have to think about that. And then create a page and then you -- then you can post things to that page as someone who is using Facebook and with your own e-mail address, you can like that page and see what's happening but you can access the page and post on the page without having to be friends necessarily with the folks on it. Some of the pages that I am running, it looks like there's only a few people liken it. That's because it's more organizations that are liking the page. Each of those organizations has other individuals liking their page and so my page information will get shared to them. I think also we need to be clear, we are not going to have pages like pets Mart does. Pets Mart will have 2 million likes because it is across the country. We have a smaller community of folks, but what's important is we are getting out to them and we're getting them the information.
It is the organization that is creating a page, not the person. It is against Facebook policy to create to profile pages. But it is not against Facebook policy to create a page separately. You will see it on the bottom. You can even go into -- on their help site and ask how do a create a Facebook page and it will walk you through exactly how to do that. It is against their policy to have two different personalities, yes. You will see -- your local councilmembers will have to personalities because there are limits on how many people. But it is not against policy to create a page and say I am not on Facebook. That's the only way that you can have a page where you are not having to be friends with people that are liking it. And they are responding to what folks like us need come which is -- we want to be able to do things both as individuals and as organizations. And there was another question, before that. I can see it.
This is Kathy. Claire asked something about guidelines for lobbying. When you want to share advocacy invoke.
Okay. Exactly. The Utah family voices thing, they were simply saying there is an appropriations hearing. Here's how to participate in that hearing. And it is -- as nonprofits, we are permitted to be involved in the legislative process. And I believe strongly that one of our roles is to help families to be educated about what is the legislative process and how can they get involved. And for many families, it means needs -- concrete. How do you dress? Went to arrive? Knowing that you may be there all day long and preparing for that. What do you do when you get up there and you become overcome? How do you handle that part? All of those kinds of things. Hugh can also -- as well as to sharing information about those. If it was about a particular piece of legislation you might say there is this bill and interested parties might want to consider the Bill. And lay that kind of stuff out. You are not telling anybody how to proceed. You're not saying go out there and oppose this bill, you're just saying there is this bill, and you need to be aware of some of the pros and cons of the bill. And that is fine. And I think going further than legislation, because I think that there are regulations and policies and then there is practice. And it is imperative that as families, we are involved and at the table at each of those steps and that it is not simply funded agencies and funded providers but also families are at the table when things get discussed so we can bring up those issues that others may not bring up or may not be aware of and we can avoid unintended consequences.
Any other questions?
Maureen, I have another question. We have some time. So I thought if you are okay, I would ask one more question. I think I alluded to it in the introductions that you do have a some with a disability and are you okay if I share that -- I probably should've checked with sue for us. I will back up on this. I know your son is in school. If you are just starting out now, if you are just -- if you were just an infant now and you know what you know now, because I don't think you knew everything that you know now when your son was born.
No, I did not.
Now, you know what you know and now you're starting out, because I am looking at the attendees list and I'm not sure but there might be some parents and certainly there are a lot of us that are going to be working with parents that have an infant that -- not many people know exactly what is going on. So what would you tell that TA provider? What would you tell the individual parent if they were in the shoes that you were in when your son was a baby?
Let me back up. Cap he knows that when my son was born he has a condition that most of my doctors couldn't even spell, let alone pronounce. I went home and plugged in a modem and looked it up. And had to hear that -- I got on a listserv and started sharing. And I suddenly found out that somebody was at a conference, and they knew that the it orthopedist that were presenting at this conference were talking about my child. And so I was a little surprised by that. And I did go back and talk to my orthopedist and say I share a lot about my kid and I'm totally okay with that. All I wished is that you at alerted me before hand that you might be presenting about my kid so that I would know that others might know about him. I share that story often with families because they are -- people in the room who you knew online and had never met new from the description that they were talking about your child. And the doctor never mentioned my child's name or anything but I had shared enough about his condition that people could figure it out. And I'm okay with that and I think my son is okay with that. I do chickens with them. He is almost 15 now. Sometimes he threatens to sue me for sharing information. All in jest. However, I have also seen the power of the Internet for other families. The condition that my son has, there is a lot of pressure on families when it is diagnosed in utero. There is pressure on families to terminate pregnancies and so I think it is incredible that families are willing to share their experiences because I think it -- we have been able to push the medical community and we have made significant changes in the approaches for our children over the last decade. And that is totally through the Internet. But I would also say to families, now when I refer to my children's school, I called by a nickname. I don't refer to my child by name when I am blogging about him. I use an acronym. I think that that is important. Debbie says she has a friend who pays money to the kid every time she talks about him in public. It's important to remind people that the Internet is like living in a small town and talking on the party line. Or posting it in the grocery store for all to see. There is that aspect of it. And the world has gotten smaller, thanks to Facebook and YouTube, because it used to be with listserv it was just what I typed up about myself. But on Facebook, the photos that I share, the videos that I share, but I think it's also -- I really like it. But I think it's important to let families know, you might want to think about what you are sharing. You might want to think about -- remind yourself that you are talking about a child. You are not telling just her own story. You're telling someone else's story. And that is important. To be aware of the fact that you are sharing someone else's story.
Maureen, I see Barb is typing.
And so is Joe lean. I am waiting for the typing. You can also star 62 unmute if that is easier. Absolutely Barb. Is a really important to keep asking? We went through a period where my son was diagnosed by a doctor with chronic recurrent abdominal pain. And that's woes what the doctor wrote. I saw the doctor wrote it up as crap and I was really annoyed. And I turned my son and said from now on you're going to face time this guy. When you have crap, you face time him so you that she can see that you're not just complaining about something and he can see what you look like when you're going through this. It turned out my kid needed a major surgery to have some major stuff taken care of. I think there are some really great things that we can do using all of this media and Internet that we have. Even at 32, they may have talked about it. I did share in the handout, a whole thing from the today show from last week. About parents of typical children sharing those infant toddler pictures of their naked children, and what others think about that.
I think also there has been a great push to change the way we view disability and I think we can really harness the Internet about how we view disabilities as being part of life. That I think for me is what I have seen -- where I have seen the biggest change in the last five years. I used to be on a listserv any parent would write about something. Anything they talked about on the listserv was very disabilities specific. And they would put their name and their child disability and all the therapies they receive. Today I'm friends with those people on Facebook and what I get to see is all the typical things, the everyday community things that those kids do and disability becomes just one more thing. It doesn't become the thing. And I think that is a really wonderful part of how this has changed life for families.
Maureen, we will give one last call for any last questions or comments. And I see Joe lean and Claire are typing. Thumbs-up from Joe lean.
I think we might be good to go. Boring, I really want to thank you. This was terrific. You have given us a lot to think of and I hope everyone remembers that slide that you had, just start. Start simple, and just take a go at it. Maureen is going to be doing this webinar again Sunday evening. We purposely did it during the day and we want to do it again in the evening and it will be Sunday evening at 7:00 p.m.. To accommodate different schedules if it is easier for parents and family members who are working. If you have some friends or family members that you think would really enjoy this, please share the word. I'm going to ask Randy at this time if he would post the link for the evaluation. We have really a two-minute and valuation instrument that I would ask you to take. If you could do that. And the last question of the evaluation is if you are interested in continuing this dialogue, with those of us in NSADB, maybe we can entice Maureen to join us on occasion just to keep us on the right track. You will find my e-mail address and please just to send me your name and address and we will organize all of that on our end. I see share is typing. Sherry, if you want to unmute if there is anything you might like to say on behalf of NSADB, I want to say again Maureen, really great job. Thank you so much for this webinar.
Thank you Kathy, I was just typing NSADB's contact information in the chat box for everyone to see. Also, please feel free to get in touch with me as well if you have any questions about our organization. I am putting my e-mail address in there. And I wanted to thank Maureen. I think this is fabulous, great information for us to have.
It sure is. Maureen, Randy, Sherry, I will see you again Sunday night and I will say goodbye and thank you. Thank you for joining us today.
Thank you, goodbye. [ Event Concluded ]