Event ID: 2229809 Event Started: 9/17/2013 3:48:56 PM ET

[Please stand by for real time captions.]

Hello and welcome to everyone to the post self-advocacy webinar, youth and self-advocacy. My name’s Hillary Spears and I am the director of training and technical assistance at the National Association of councils on Developmental disabilities also known as NACDD. Today's webinar is funded through NACDD’s technical assistance grant from the administration on intellectual and developmental disabilities AAIDD. This webinar is a part of an ongoing series for follow-up from the allies and self-advocacy summit. These webinars are being developed in collaboration by the summit national planning committee organizations which are the national youth leadership network NYLN and the Association of University Centers on developmental disabilities AUCD, the autistic self-advocacy network ASAN, Self-Advocates Becoming Empowered SABE, NDRN national disability rights network, HSRI and NASDDDS.

In 2011 and 2012 self-advocacy summits were held all over the US -- ministate teams they might get many disabilities involved in self-advocacy activities. In this webinar will assist organizations and individuals in empowering people with disabilities to become self advocates. It may seem hard to get people involved but not impossible. There are going to be three parts to do -- today for the webinar in the first is a group of young people with disabilities from the National Youth Leadership network. They will share tips and tricks on how to get young people with disabilities involved in statewide self-advocacy activities. Second team Guam will show their progress on their summit goal which is self youth advocacy and third all participants will be able to discuss best practices of young people with disabilities and statewide advocacy activities. -- Advocacy activities.

The speakers today are Staci Forrest, Kathleen Downes, Laura Spoerl, Cindy Singletary and Lynn Tydingco.

Staci works at NYLN as a curriculum development specialist. She is going to college for special education and elementary education. She is going for a minor in women's and gender studies. Staci loves to teach, educate and advocate. The special thanks go out to Staci for being the lead on NYLN and planning and executing this webinar. Next is Kathleen who is on the NYLN Board of Directors and from Long Island New York and a student of community health and disability studies at the University of Illinois at Urbana-Champaign. Next is Laura who is also on the NYLN and -- heavily actively involved in Wisconsin youth leadership forum for many years and a board member of Wisconsin youth leadership forum. Laura graduated from UW Milwaukee with a BA in psychology.

Next is Cindy. She has been working with youth with disability for over nine years in different capacities with different and various organizations including Center for Independent Living, The Youth Ed and the service on collaborative boards and committees. Having lived with disability, she and -- enjoys assisting youth and enjoy self empowerment and last but not least is Lynn Tydingco and she is currently the share of the Guam DD Council. And a member of the state rehabilitation Council. In 2012 she was a pivotal member of the Guam self-advocacy team. Since the summit she has remained patent -- passionate and dedicated in completing their goals with the team. When cohost, and as the president of the self-advocacy self organization SINA in Action.

Before we go into the webinar I would like to go over a few house thing items to familiarize everyone with this overall webinar format. First let's talk about the audio portion of the webinar. As you noticed you will be using the phone to listen throughout the webinar so please be sure to turn off your computer speakers to avoid any feedback. In the middle of your screen you will notice there is a pod which will be showing the presentation right now it should be having the youth in self-advocacy page. You'll notice under that, there is a captioning pod and currently we are dealing with technical difficulties but that will be where the captioning is if it becomes available throughout the webinar. To the right of the large pot are three smaller ones in the first has notes on how to access the sound through phone line or Mac the second is a chat pod which will allow you to type in questions and problems you may be experiencing or any comments you have throughout the webinar. The third is a participant list which allows you to see who else is on the webinar today. There are many other features such as indicating your reaction, the emoticon, adjusting your screen size, so feel free to explore the options to enhance your experience. All participants will be muted , however if you have questions or comments at any time during the presentation you -- we encourage you to type them in the chat pod or Mac at the end of the presentation the speakers will take questions if there is any remaining time. At that time I will give further instructions how to raise your hand through your phone line to ask questions. Again we would do this towards the end of the webinar and also be the opportunity for question-and-answer with each other. This webinar will be recorded and the length of the recording will be e-mailed to all participants who signed up for today's webinar and also be available on the allies and self-advocacy website. Without further review I will pass it over -- presentation over to Staci.

Hello everyone my name is Staci Forrest and I’m the curriculum development specialist for the NYLN and also on the call today I have Kathleen Downes, Laura Spoerl and Cindy Singletary and we will start the presentation with you entitled to empower us to lead young people with disabilities in self-advocacy activities.

What is NYLN? To give you a general overview of what exactly we do. It is a national nonprofit organization that is run by and for young people with disabilities between the ages of 13 to 30. We believe in full inclusion, building community and building interdependent support systems. What we mean by building interdependent support systems are working together and in order to forward the goals that young people have and it's very important to know about the support systems that the young person with a disability decides who belongs in their support systems. NYLN offers training and materials to young people and online we have a very large resource database that you all can access by going to the website. (www.nyln.org). We also offer curriculum training tools and one that we currently have is reap what you sow is all about building interdependent support systems. This webinar is based on the document actually that the national youth leadership created which is taking on the same name as the presentation. This document you will see a preview at the end of the presentation and it's a two-page document that outlines the few tips and tricks that young people with disabilities thought to be some of the most poignant things that I want to include young people with disabilities to know. And how this document was formed, a group of young people who serve on our board came together to create this document. We had a few different calls and NYLN work through the tool platform. We have a lot of work online and through e- mails and teleconferences, we actually were able to create this document.

All the other speakers who are on will actually be sharing all the aspects that we put into the document and the first speaker will be Kathleen who is going to be sharing, include us and give us work that is meaningful point that we need on the document.

Thank you for being here today. Our first point from the document is including young people with disabilities, asking to be included in self-advocacy meetings and activities. Sometimes meetings and activities may not be specifically geared towards young people. We feel we can still have a role because our voice matters especially as the next generations so were asking the self-advocacy groups to find a part for us to play because we have important concerns that need to be shared.

Secondly, please give us work that is meaningful. Sometimes young people are underestimated that their capabilities. But we can contribute a lot to self-advocacy activities. Young people are especially creative and innovative when it comes to meetings. The challenges of the current page so were asking you to believe in us and give us work that will allow us to make a difference.

This is Laura. I will be talking about giving us time.

As in people's disabilities, a lot of the disabilities interactions that you might have with them need processing information. And for time to understand what is happening. Not all disabilities are physical or visible. --Don't need more time actually do. We have all thought that giving us time is huge and crucial. This includes in work, school, projects and meetings that we’re part of. Allows us to ask questions if we don't understand something. A lot of time we just need clarification of what is being said or a little bit more in depth information before we can respond.

This is Cindy. I'm going to talk about not underestimating us. Simple judgment

Can occur where you may feel like we don't understand or we are not experienced and that is not always the case. It is good to not underestimate the young person abilities because you might miss out on what the abilities are. We know what we can do and cannot do. We are often known how to adjust and how to accommodate. We ask that you guide us a little bit but don't take over. Ask if we need help but don't underestimate and assume we will need help. It's really important for you to not underestimate us but -- because we will not know what the abilities are. Underestimating can be really dangerous for you.

We also asked that you be flexible. And all acts of life we have to be flexible. We are all human and function at different speeds. And we have different abilities and strengths. We ask that you are flexible with the youth and to help keep them involved. At school schedule and different things that adults are not young adults, we ask that you schedule meetings, activities and perhaps provide times or days and that way the youth and young adults can be a part of that. If they stay in school or work and if they are not allow the opportunity then you might miss out on what they can be providing. Take everyone schedule into account including the youth and young adults because everybody has busy lives. They also may have to rely on transportation or they may need to rely on someone else's schedule. We ask that you be flexible and perhaps do a teleconference -- teleconference. We ask that you be flexible with things.

Using social media, it is a part of the world today. It is everywhere and you can see hash tags and @ signs everywhere and accessible options. That is a part of the world and young adults and youth and in order to be a part of their life we have to adjust. That can sometimes be scared for people who are not very technical or may not like different type of social media aspects but it is something that you can put the young adult in charge of and they can help make a base page or a twitter page for your program and they can help try other young youth adult. That's a great outreach and a great way of communicating. Dialogue and social media is a new way to help us communicate and also helps with flexibility because you don't need transportation to use it. There are a lot of accessibility options for it. Social media is a great outlet in youth and young adults. If you use social media with the program, you're going to have a lot of reaction in and adults and therefore you may benefit a lot from what they can provide and what they can support in your program with.

-- Program with.

This is Kathleen. The next point is to involve mentors. In people with disabilities want and need mentors. Especially youth with disabilities we can have a harder time identifying role models. It is important to find us mentors that can support us in doing or as you see works. Young people are very capable but advocacy groups need to be aware of the young people may need help and support from others and mentors are a good way to do that because we get support we need and we get an opportunity to network with our coalition which is an important part of being an advocate.

This is the last of the important parts that we wanted to share with all of you. This is creating a safe base. I believe it is one of the most important that you can do when including youth with disability. Because as I'm sure each of you have experienced some point in your life, your most comfortable in most opening and share the most and get involved in the biggest way when you are comfortable in a safe space. Treating that is key and vital. It is a space where everyone feels comfortable and valued regardless of your ability or background. For your identity. And it allows us to voice concerns and issues and knowing that we can go through others if we need help for support. Be sure to actively listen and take in what we say or Mac for having met back and forth --.

By having met back and forth can talk about issues that we are discussing and treats a way for everyone in the group to think of more and better ideas. One way to get us to have a safe space is to come up with rules to follow in that way everyone's on the same page and what is expected of each other. Part of this is making things successful. There may be things that if you create an option with use of disability you may find out that everyone else -- someone of the group could benefit from that as well.

This is Staci, as I said those are the main points that we actually put in the document and we hope that the fact that you have heard them speak about our main points will give you ideas for how you can start doing those things with the young people that you work with. Also if you have questions about how would be the best way to go about initiating having a safe space or being more flexible or evening using social media. I know at the end of the webinar they will open up for questions at the time and we will be more than willing to answer your questions. And I put on the screen you will see the contact information for Betsy Valnes, NYLN executive director and this is a great resource with knowing more about what NYLN does. We do a number of curriculum, exercises and community outreach and we have about four state teams that are throughout the US and I believe those are New York, Delaware, Idaho and I can’t remember the fourth one but those are some of the state teams that we have. If you have any more questions about NYLN, I recommend contacting her or Mac and Hillary if you put up the document so they can see what it looks like.

To let everyone know, this document will be available in the link, it will be sent out with the recording of the webinar so everyone is encouraged to utilize this also document from NYLN and use it statewide.

Next up we have Lynn who will be the presenting from team Guam.

Hello my name is Lynn Tydingco and I am from the beautiful island of Guam. I wanted -- Guam. I wanted to discuss the organizations and with and it is important to be involved because our voices of self advocates are the strongest ones and we need to have that very important discussion at the table and our model with SINA -- which is an acronym for self advocates in action nothing about us without us.

SINA is an acronym for self advocates in action. We are 5013c nonprofit organization. And we are comprised of individuals with all types of disabilities and the families. Our mission is to promote self-advocacy and self-determination to enhance our life as advocates.

What we are going to talk about is the progress of the three state territory goals. Self-advocacy goals that we established as the 2012 AA IDD self-advocacy Summit in Honolulu.

Our first goal was to be recognized as Guam self advocacy organization. And we are very fortunate to have a very supportive network group and how we did that, it started when we got back the Executive Director for the Guam development or disability Council, that the program coordinator, contacted the Guam legislator and expressed the desire for us to become and recognized as a state advocacy organization and what we did was tied in with our AAIDD awareness month. There was a legislative hearing that was scheduled in March of this year. In March of this year, and whether this is all of the DD network partners, and the most important voice was the self advocates and what we did was we welcomed the new policy makers who were just sworn in earlier this year and educated them about what a disability is in the importance of self-advocacy and we needed their assistance as well as the governors. In being recognized as a state self-advocacy organization. -- Advocacy organization.

They provided testimony and in support of the quest. Then about one month later the legislator contacted us and we went to the governor’s office and we were presented with legislative resolution. And asking for the governor's endorsement. To become the state -- state of organization and we are waiting the schedule to be presented. We will be Guam recognized self- advocacy organization -- advocacy organization or Mac so think you'd --. Thank you to our partners. The second goal that team Guam had was to establish senior self-advocacy youth chapter and since the return our advisors and members of SINA have been very active in going out to the schools and collaborating with the high school administrator advisors and also involving our senior youth leaders that we have been grooming to get out and formulate these youth chapters. Two of the youths were present at the summit. And we are right now, we have established the work team and established charters over at Simon Sanchez high school. And our senior youth leader is Maria Bontogon over at John F. Kennedy high school. We have two senior youth members who are helping to establish the youth chapter there. And Jiang the Ghana, throughout the whole process of organizing in formulating the youth chapter, we have had the youth directly involved and participated in the conversation with the administrator and the advisor, and their quest to establish those chapters in the school. And over at John F. Kennedy high school we arranged a meeting and were proud that there were about 80 young women and men who came into this session and Ginger Porter, who is our advisor and vice president, and what we did was we went in and talked about self-advocacy and how it was important. As persons with disabilities. And the interest was great. Right now we are working to further develop the youth chapters and we will be going in and holding self-advocacy workshops in the school and hoping to groom these young men and women to be leaders and appraise their disability and do positive things with it.

The third and final goal that we accomplished was to collaborate with brothers and sisters in the Commonwealth of the northern Mariana and those are the islands of Saipan, Rhoda ? and we have done that. It took about six months to plan and organize and was proud to announce in March of this year, myself, Andrew and Ginger to Saipan and we helped the brothers and sisters to rehabilitate the self-advocacy workshop over at the northern Marianna College and it was a joint effort. And we had a group of about 14 self advocates. It was a mixed group of adults and youth. It was very fruitful and one of the most exciting things about that, Andrew, Ginger and I have been doing this for about five years now. And something phenomenal happened during the first day of the workshop. There was a gentleman who was so fired up and he is pretty much well-versed in the self-advocacy workshop. He raised his hand and he was so excited and halfway through the day, he said excuse me, may I come up there and may I help facilitate with you. We were so excited he did attend the summit and I believe he is the DD Council vice chair. He came up and now is one of Saipan's first self-advocacy facilitators and we would like to congratulate John D? He is Saipan's first self-advocacy facilitator. That was really exciting. Another thing that was rewarding, was one of the parents that attended the workshop, they expressed to us but she always sheltered her child because -- sheltered her child because she didn't want him to be offended or teased. After the first day of the workshop, she came up and was emotional and she talked about how she had to learn to let this, -- let risk go. She learned that important lesson that’s okay to let your child grow up and let him learn to be his own person. This young man was shy during the workshop. Before the end of the first day, I encouraged him and he was reading off the slides and we have role-playing as a very important part of the self- advocacy workshop. He was the most outspoken during the workshop. We were very proud of him. Self-advocacy is important and we’re very proud to be able to share that with our brothers and sisters. And we got an update recently from the DD Council in the SINA that after the workshop they have continued these self-advocacy of, their efforts to spread the self-advocacy fire and they're now doing outreach in the schools. And were hoping to do this same type of thing. Collaborate with the brothers and sisters out in American Samoa where we are working in hopefully we can do that in the very near future. And in closing I wanted to share a quote that John our new demonstrator, he drilled it into us during the workshop and it was to embrace your disability and do positive things with it. And I just want to say that we the self advocates in action and there ain't no stopping us now. If you want to contact us, you can e-mail us at [email protected]

Thank you.

Thank you Lynn. I had a private question coming from someone asking off the bat and since when you just spoke would you be able to tell us a little bit more about what initiatives you have done with a high schoolers?

We are encouraging the youth that attended our work shop, we try to arm them with the self advocacy, knowledge and tools and skills. Learning to speak out for oneself. Know your rights and to effectively communicate your needs. And it's okay and important that you accept your disability or Mac and another thing that was been told -- another thing that's important is at times we get depressed. I say I rather have someone hate me than to pity me. If someone pities you then means you are worthless.

Just because we have a disability does not mean we have self-worth skills so we try to educate and encourage our youth, and we also try to develop the leadership skills.

At this time I will switch to the final slides of the presentation or Mac and you should see on the screen that was going to open it up for questions. We have a couple ways to ask questions. First you can type them in into the chat pod on the right-hand side of your screen. NAC someone just put up a comment. There also welcome to put up any comments and chit chat back and forth to each other. The second week and asked question is through the phone line and you can do this by pressing the star pound key this --*pound key will allow you and me to ask questions verbally through your phone line. And the third and final way is, e-mail with the speakers after the webinar and we will have their contact information available so you can ask those questions. We will open up the lines now.

Again if you have a verbal question and you would like to ask it, all you have to do is press*and pound. I have a question come in, and I'm not sure which speaker would like to answer this, the first question is what are barriers that you have faced in finding youth with disability who are interested in self-advocacy and how do you overcome those?

This is Cindy. I can answer what I have done. I have worked with state agencies and national agencies and a lot of it has been getting to the youth and finding them and having the conversation on their level. A lot of that has occurred in school and also we have had different activities that we knew were able to easily access. Some of the various have been transportation and other barriers have been family not being used to the youth out about. I do a lots of one-on- one discussions and what we call peer support. That has been how we have tried reach out to the youth. You don't want to make it too difficult on the family or the support system. And tried to be flexible is something that we have to do is think about what is there situation and how can we help them in their situation.

I will go to the next participant. Go ahead and ask your question on the phone.

It is a 670.

Hello Lynn. I just want to congratulate Lynn for doing a great job.

You did share a lot of self-advocacy issues and they were really a big help when they came out and did facilitate train to trainers and self advocates it -- advocates have been very vocal after the facilitation here in Saipan.

And we would like to thank Guam for their support.

And again thank you Lynn and we hope we continue to do more self advocates trainings.

Let's do it together.

Thank you.

The next question comes from the chat box. I think the use of social media's grade but however it seems to lose the face-to-face contact and with that being said transportation always is an issue. And the individual says same thought.

Maybe a question for NYLN. Patty way that based versus social media? FEMA --

National organization is NYLN and we do work online but I also involved in NYLN organizations in Delaware. Because Delaware is very small and also state that I would consider to have a lot of transportation problems. We tend to do a half-and-half. We tend to have social media thing going on but also when there is activities, but involved transportation, we turn off for that and no cost to the young people or Mac that is hard because you know the financial status of our world right now. We find that yes you can do things online, however NYLN in your small role areas and grassroots, I find one-on-one interaction does work with that online component. I know NYLN although we mainly focus on online platform because we are national, we also can go into states and do face-to-face training. We have also done national conferences in the past. There is a variety of ways that NYLN does that but I do understand the concern. I think having in finding the middle balance is actually important and where you and the other young part -- people are working with need to consider and think about.

Thank you.

The next question comes from the chat. What is the initial hook to get young adults interested in advocacy mode?

I know young adults who's graduated and grow from it however afterwards there enthusiasm is lacking. How do you make sure that young adults stay hooked?

This is Cindy. First of all talk about something they are interested in and a common issue is transportation. I would say that that would be one of the things and the movements if they can work on. That is something that affects them and interested in. You cannot teach them test you can teach them how the advocacy move it works and so the concert being active. That will also give them ownership. Youth and young adults, we have abilities and we want to be used to the best of our abilities and that would be one of the hooks. If it's something else in your area that the need for them, education and employment, the hook would be whatever you need in the area and the issue in that area. I would also say, I like to work with youth in high school because you still have them in school and not a second home and easy access you can do stuff at school and make a partnership or Mac then once you have that relationship, that will help after school. I would say start younger and keep the activity going. Also being something they can be interested in gives them each ownership and makes a committee. Where there is a chair where they are supporting them or Mac and that's what I would say.

This is Staci. To comment on that, how I initially got started with leadership, it was through a club with my high school. What we did was we talked about self-advocacy and self- determination is but we also went out and did conferences and I went to several different states and had a great time. When I really come from it, a very much the sense of empowerment and very much a sense of, I might want to do this. And perhaps as a career. They think that just youth empower every single young person that we see, however if you are able to empower at least one young person to keep going into keep doing it, I believe the program is successful. I attest to the fact that one-on-one interaction, being in different, you never know when the young people are going to have what I like to call and aha -- crystallizing moment. Basically all I can say is the one-on-one interaction in making sure it is the best interaction you can give and it will be helpful.

I also wanted to say, going back about the face-to-face, also remember the web cameras allow a great amount of face-to-face that you may not be able to get if transportation is not an option. We have not done that as well but it may give more. Just a side note.

That is a great point. I'm going to go to the phone lines and you up the next person in line. The next participant has a 303 number.

You are now on muted and can talk.

-- On muted -- unmuted and can talk.

It looks like we lost that line.

We would love to hear from you regarding youth goals in the time that we have left. There are many teams that have been working on youth goals and Guam is just one of many. If you have any comments or questions that you would like to ask, feel free.

We have another question that seemed to come in, --.

Many self-advocacy leaders are getting older but active leaders of the state organization. How can you provide opportunities for young self advocate leaders and not hurt or forget about the older self advocate leaders?

Any answers for that?

This is Cindy. I was part of the state team and from Mississippi that did the summit and what we have, in our states the summit that we have a state team, and we have it half-and-half. And we have youth and young adults and what we have done, the mentorship that we discussed in the presentation and in document is we have that and we discussed issues and attack issues that everyone but we have an equal -- it on this to it and we haven't where the youth and young adults can seek advice and mentorship from the adults that are not used in young adults.

They seem to enjoy that and they like to be will to share their cost of experience with youth and young adults.

Are there any other speakers the one to comment on that before we move to the next question?

This is Staci. Just to go off of what Cindy said, one of the organizations I belong to in Delaware an advocacy coalition that originally it was started by the people first chapter of the parts of Delaware. It had mostly older individuals there for Mac and when I came into this organization I was the only young person there. And that was very interesting transition but I found what happened was for them to were initially not open initially to the fact of young first was sitting at the table with the but after a while they began to open up and began to realize just because I am a young person doesn't mean I don't have something to share that is important. Yes, I do believe in what Cindy says, having those groups that do cross the stage like that.

It looks like a question just came in. There is conversation in the chat box, around what type of events are hosted outside of training. Overall in this might be a good question for Guam as well as any of the NYLN folks on the phone. What types of events are good to engage youth in? This is Kathleen. I have a few suggestions. Since I have been a part of NYLN that had the chance to participate in other webinar's the no not necessarily training. That is just information one in topics with disabilities such as voting for people with disabilities. And also it can be helpful to get young people involved in disseminating writing and art that tell us their experiences for example, we had a bunch of people with NYLN -- and write about disability pride is an important cultural change to keep young people engaged.

This is one. -- This is Lynn. One of the things we used to engage is the common bonds. Outside of the workshop and we asked them and highlight the talents. It's all about highlighting the abilities. And a lot of them have common interest, perhaps in music. One of the self advocate, she plays the piano. She collaborated with another self advocate who loves to sing. And then we had another one of the youth that joint a poetry slam and he won first prize. With the poem about the disability and the trials and tribulations that he experienced growing up with a disability being teased and bullied. Now coming into a leader in this world. One of the goals for the youth is we were brainstorming, what could be another bonding factor for we were thinking of having a youth Fest which bring together the youth from all over and even from the other islands and encourage them to have a festival where they share arts and crafts and talents with us. Then have a day or couple days for weekend and come and have a bonding session and they can also share their experiences. That is something that we were brainstorming about.

Thank you Lynn-- Lynn.

At this time we are at the end of our webinar. We are going to go ahead and at this point. Thank you all for joining in and thank you especially to the presenters today. We will be following up with all of you via e-mail and going ahead and sending out youth -- NYLN recording as well as a short survey and again in queue for joining today.

Thank you -- and again thank you for joining today.

Thank you Actions