More Than the Law - Some Thoughts on the Transition of Individuals Who Are Deafblind

More Than the Law - Some Thoughts on the Transition of Individuals Who Are Deafblind

Presented by Steve Perreault

1/23/13

[Not part of recorded webinar]

[Robin Sitten] Welcome everybody. We are getting started in a second. We have a few more people logging on. My name is Robin and it's my pleasure to welcome you to today's webinar. Today's content will be helpful for you and we are glad so many of you could make the time to participate. Before we get started I want to review a couple of things quickly for those who are new to this format of webinar. If you are not now seeing the Perkins welcome screen on your desktop, Adobe may have been minimized on your desktop. Look for the Adobe meeting icon at the beginning of your screen and click that. We will be showing slides during this presentation.

All of you will be on mute. That is helpful for background noise but we will have time at the end of the webinar for questions. Throughout the webinar if you feel questions pop into your mind you can ask them right away in the Q&A box or you can jot them down and address them after our speaker is finished. You may see a pop-up screen asking you how you would like to receive audio for this webinar. You can click cancel on that screen. You don't need to engage with that if you are using your phone and you should mute your computer speakers and that way you won’t experience feedback between computer and phone. We record these webinars and this webinar will be available by tomorrow on the Perkins elearning website. You can also find previous webinars we have recorded and view those as you like. Thank you for joining us for this event. We’re doing our best to ensure you have a good experience as you attend these professional development opportunities. I would like to welcome and introduce Steve Perreault who is the Perkins international regional consultant for South America who will be sharing thoughts with us today regarding transition. I will give the floor to you, Steve.

[Recorded webinar begins]

[Steve Perreault] Good afternoon. This is a new experience for me also so you will see me expanding my learning curve as this webinar progresses. This presentation—hi Gloria—was originally given in Brazil for the deafblind international conference. It was a challenge to think about transition away from the law that we have or the regulations we have on transition within our education law in the United States. And for me to try to think about what are some core things that are universal about transition. Where have I seen and experienced success and also felt like sharing what I have learned over the years having been involved in different aspects of transition or working with students and families as they exit education and move into adult services for more than 30 years. Of starting as a teacher in the early 80s—and then moving on to coordinate a state program dedicated to the transition of young adults who are deafblind in Massachusetts, to working with families through the Hilton program at Perkins and now finally in Latin America. I love questions and I hope you think about questions and I will definitely take time to have some discussion at the end.

These are some points that I hope will come clearly through the presentation. I am going to start with the law in that I feel—that it offers a model but I also think sometimes we limit ourselves in thinking about transition to the regulation. I particularly think for individuals who are deafblind, we need to go beyond just what the law says. We will look at the results. There are a couple of surveys that have been done and looked at what has happened in transition for individuals who are deafblind in the United States and what that tells us— one was a professional survey and a family survey. I would like to talk about aspects of transition not defined by the law and working with families and parents on transition. And particular strong point—what does what we know about transition impact teaching and how we develop curriculum and how we develop programs for individuals who are deafblind or with multiple disabilities.

So we know with the law in the United States. It has been around for now almost 25 years there has been mention of transition in the education law. This is been revised and developed over time and implemented sometimes with consistency in different school districts and sometimes with less than consistency, sometimes people really buy into this as an important part of education, and sometimes I think this—this is just one more thing to do. But it can get lost in a lot of other demands that teachers have and school districts have in really focusing on transition as an important part of the education of an individual and transition as really the outcome of education and for me the test of what we taught, how we taught, and was it successful.

Transition is supposed to be results oriented process so that it is not just the plan or the activity, but with the vision at the end that can be evaluated and seen as being accomplished. It also supposedly facilitates a child's movement from school to post-secondary education and a variety of other outcomes and employment or expanded education. I have to say that having worked in more than 50 countries over the past 20 years it really strikes home to me, how our values on employment are central to how we measure success. That education leads to employment and that is the only successful measure of an education. I'm hoping in the presentation to think a little bit more about that particularly as it applies to youths, children, and adults who are deafblind. And then it is supposed to in transition based on the child’s strengths, preferences, and interests. This is a real snapshot of what the transition law says. There are many more details to it. I'm sure many of you are aware of. And I really didn’t want to focus on the law today.

I would certainly like to refer you -- I wanted to not repeat some of the great presentations. There are four other presentations on Perkins elearning website that I think are very valuable. If you haven't seen them I am hoping that they would be a good supplement or that I’m part of a really strong team here at looking at transition. David Riley from Texas has a wonderful webinar on using person centered planning and maps. For myself I was first trained in mapping in early 90s by Beth Mount and have exported it in many situations around the world and particularly find it a great tool in engaging families and engaging community participation. I think David has a great presentation on that. Beth Jordan has a webinar. No More Confusion about Transition to Adult Services. I think that is also wonderful information of , we have one agency our department of Ed which handles almost everything education wise and is a big part of services for individuals who are deafblind. As they move into adult services often there are multiple agencies that may or may not be appropriate and creating those paths from education and those linkages into adult services have always been a challenge particularly whether the individual who is transitioning may have more than one disability and nobody is quite sure how to deal with the other disability when they feel comfortable. For example, way back when many of our students here with rubella syndrome were transitioning into adult services, it was common that they went to a commission for the blind but because they had deafness that didn't fit there, they didn’t fit at the commission for the deaf. The commission on developmental disabilities wasn't sure. Having these routes into adult services are very important and I think that Beth mapped this out very well in her presentation. Wendy Bridgeo looks at some vocational training for individuals with charge syndrome that are applicable to a wide range of people who are deafblind and finally our illustrious Mary Zatta has a wonderful presentation on creating vocational portfolios. I will refer you to all of those and I tried not to duplicate what has been included in this presentations.

The first thing that has me questioning a little bit about transition and thinking we have much more to think about and to grow even though we've been working on many methods of creating plans of creating advocacy and creating services -- even in the United States over close to 25 years, I think there is more that we can do to define transition and to look for success in transition. This is just a brief piece of a follow-up survey that Joey Petraff did, for the time I think it was NTAF and now the National Consortium on Deafblindness. And in 2001, I believe. It looked at 200 individuals who were deafblind and what happened after they transitioned after education. This is a good 15 years into the implementation of the law. We found 61% were still living at home with family and 82% are unemployed. Neither of these for me are necessarily a measure of success or not success. But I think they are an indication that although the transition law was written for the wide range of individuals with disabilities and the markers for success are based on that wide range of individuals with disabilities, perhaps our core population of individuals who are deafblind or with multiple disabilities we need to look a little bit differently on what is success for them and what success for their families. Certainly we could use more opportunities for employment and certainly we could use more choices in appropriate and accessible living situations. But is there something more we need to think about?

How do we know I think -- how do we begin to explore and expand how we know what successes and how we define success. I believe that there continues to be insufficient connection between those who work in the lives of children who are deafblind and those who work in the lives of adults who are deafblind. I believe there is been not enough connection or not enough knowledge of what is the life adult life of someone who is deafblind and no matter what the capacity is, and I think that knowing more about that can influence how we develop education programs, can influence how we think about curriculum. And can connect education with individuals who are deafblind to lives that are accessible and successful. That that knowledge f people who are deafblind can stimulate more success. And I would recommend that as teachers or program administrators --that we need to promote that interaction. To learn what happens to an adult when they leave our programs and what happens to our graduates in our systems and our states. And what happens in their families. To know better the lives of deafblind people even those who become deafblind as adults in our communities. How do they live and what kind of supports do they need and what do they like and what don’t they like, where are they successful. Where do they enjoyed themselves and meet people and how are they social. Who is working and who is not working. All of that I think is wonderful information that if we were -- less of a separation between adults and education services I think we would have a much more dynamic and creative system for developing better success for all individuals who are deafblind.

To have better connection with parents and family members and know what they are feeling and what their experience is as they leave us as they leave us in education or as they leave systems and transition into -- as the individual who is deafblind transitions, so too does the families transition. And for many of them they have a safe network or team of people surrounding them for multiple years and often they lose along with the transition of their son or daughter who is deafblind and need to make new connections with new people with new missions and how does that impact their family and how they promote the success of transition off their son or daughter who is deafblind.

And all of this begins to feed our teaching and program planning. This I think is a wealth of information and a wealth of ideas that could be used to enhance the successful transition. And successful teaching leading to successful transition. I would say for myself back in the late 70’s and early 80’s when I was a teacher this is before the law, there was no thought of transition and the standard practice of that time was that you taught for today, you may have a plan for the year, but you didn't think at all about anything into adulthood. It was not considered the responsibility of anyone working in education. And I'm dealing with finding how that is true in other countries who have yet to really embrace or know about the concept of transition. For myself as a teacher for children who are deaf blind I have never met an adult who is deafblind I have no idea what people did as adults when they were deafblind. I had no idea what it happened to students who were graduated before mine. And I think this was a huge gap in my learning needs as a teacher. And we really face this, in almost a crisis form, in the mid-80s when we realized that the huge percentage of students who were deafblind we working with you had all been born within one or two years of each other would soon -- lose their right to education and be moving into adult services and yet nobody was prepared to deal with them.

We were fortunate to have some good advocacy and our program at Perkins. We had a wonderful leader, Mike Collins who helped bring in the first funding to create transition. It wasn't even called that at the time. It was some prevocational, vocational training. But it was moving beyond the classroom into the community and it was connecting what was taught in the classroom to support that movement in the community. And we were working certainly using a lot of guesswork. Sometimes I think now if I knew then what I know now I would hope that we could even done a better job and I think there was a tendency for us to limit expectations based on our lack of models of success and knowing what would be a successful life after school.