Leveraging Resources in Transition Planning

Chapters:

1. Introduction
2. Dealing with Transitions: Planned and Unexpected
3. Encouraging Self-Advocacy in Transition Planning
4. Strategizing to Maximize Access to Services
5. Advice for Transition Planning

CHAPTER 1: Introduction

MCGOWAN: My son Hunter is my youngest of three. He had a great four years through high school and remained on the honor roll for four years. Hunter has a disability of access of deafblindness due to the etiology of Usher syndrome type II. His diagnosis came about maybe between his age of three to five years.

NARRATOR: We see a photographic portrait of Hunter and his older brother that was taken shortly before Hunter's diagnosis. Hunter's brother, who is about a head taller, has his arm wrapped around his younger brother's shoulder.

Next, we see a photograph of a smiling Hunter taken when he was in first grade. Hunter is now wearing glasses and bilateral hearing aids to address his vision and hearing loss.

MCGOWAN: I began to search online and found some parent family-friendly courses concerning vision and/or or hearing or deafblindness through the Hadley School for the Blind had some programs for families, also the John Tracy Clinic.

And as I became more involved with my state deafblind project, I learned about our National Center on Deafblindness. And that was probably the best thing, because I always felt like I would find information about hearing and information about blindness, but it was very difficult up to that point to find information on the dual sensory and the impact.

And so I began to educate myself. We decided upon an approved private school for kindergarten that was a School for the Deaf, and that was his first placement.

NARRATOR: In a photograph taken at the DePaul School for the Deaf, Hunter stands between two girls who are his schoolmates. All three wear glasses, and the young girl on the right, like Hunter, wears bilateral hearing aids. We see a wire that drapes from behind her right ear down below her waist.

MCGOWAN: It was an oral School for the Deaf, and so we needed to begin to bring in the vision supports so that he would be supported both for vision and hearing, and so that was the beginning. And of course at that same time he would have related supports of speech and language pathology. Early days, he had some OT and PT, but he seemed to be OK with that, so it was always really the vision and hearing, the speech that was important.

CHAPTER 2: Dealing with Transitions: Planned and Unexpected

MCGOWAN: In the disability world, we hear the word "transition" and always put it toward post-secondary transition. And I think I was very fortunate because my Helen Keller national rep had once said, you will have many, many transitions in your journey of deafblindness. Treat each one as a practice to that big post-secondary transition or transition into adult life.

So very early, I would go to forums or trainings and think about transition and apply it. We have many transitions from elementary school into middle school and transitions not always in educational settings. Transitions at home, transitions in the community. And so I was constantly thinking and realized very early that we needed a plan.

NARRATOR: We see two photos, one of Hunter in his Little League uniform and the other taken during Hunter's Eagle Scout ceremony. These activities are examples of some transitions outside of the education realm that Patti and Hunter would have thought through and planned for.

MCGOWAN: My son attended an approved private school that, when we started there for kindergarten, we thought that he would stay there in a placement through 21. And we found out probably when he was about fifth grade, that the school would no longer go past the eighth grade. And so I thought, ah, what do we do?

And so we brought together our team, and we began to plan. And we knew that he would mainstream back to our home district for high school. And it was interesting because his current school, the approved private school, I think was about 63 students, and we were going to now go back into his high school of 1,700 students. And we knew that he would need some of his equipment and secure an intervenor, who is a paraeducator that is specifically train with deafblindness. And that he would go into the general education curriculum.

NARRATOR: Hunter and an intervenor are shown together using some of the adaptive technology that allowed Hunter to access his curriculum and complete assignments.

Hunter sits at a desk while the intervenor leans in over his shoulder.

A reading assignment with highlighted passages appears on a laptop screen and also enlarged on a monitor.

Hunter is peering at the text on the larger monitor.

MCGOWAN: We really took the team approach, and outside of a typical, yearly IEP, we would meet at least quarterly where we would all come to the table. We would have an agenda. We would bring a note taker, and everyone would really come to the table with the same goal, which would be Hunter and his success within the transition.

And we would use tools, if need be. We had representation from, of course, the family, as well as Hunter, the educational team. We would have outside agencies, the service related supports, community folks from our Deafblind Project. And whether we needed some rubrics or some tools, we often used the Supplementary Aids and Service Tool Kit, which was very positive because we could always look at strengths and weaknesses.

Make sure that we were realistic about our dreams, but that they could be very well achieved by working together. And at the end of the meeting, we would think of what we needed to come back if there were any tasks to continue, so we just worked really well as a team.

CHAPTER 3: Encouraging Self-Advocacy in Transition Planning

MCGOWAN: Once Hunter went into high school, we really began to implement everything that we had discussed. And there were always lessons learned, and of course, as Hunter began to mature, his input was great, because he would tell us what worked and maybe what wasn't working. And it was interesting because he — early on, we had encouraged him to be a great self-advocate.

And when he came into high school, he had prepared a PowerPoint on himself called "Me at a Glance". And he offered that to the new teachers and to any new supports because he did use a lot of assistive technology.

He would talk about his diagnosis. And it was funny because probably about half way in his freshman year, he came back to the team and said, I need to tweak this PowerPoint and really present it to my peers because he was rolling in a desk that had all types of equipment. And he felt the students were questioning what it was for. And so the team said, that's great.

And for the first couple of years, he would do that. So he would present a PowerPoint on himself and his diagnosis and the equipment that he used, and then he had sort of a peer-friendly one that he would also share with his peers and his fellow students. And he felt very comfortable doing that.

NARRATOR: We see the title slide from Hunter's Me at a Glance PowerPoint, which shows Hunter sitting at a desk with an open book in front of him.

He's using a CCTV enlarger to magnify the text and display it on the monitor. Another slide is titled "What is Usher Syndrome II" and contains the following text information.

"Usher Syndrome II is a genetic disorder. Usher's II is characterized by progressive vision loss, progressive hearing loss, trouble with balance."

MCGOWAN: And it was nice because, of course, as an IEP educational team, you're constantly working together and with the goals. And so each year we just would build upon that. And if he had met a level, we would then just take it above that and continue to plan, continue to discuss, and work together.

He has always had the dream to go to college. He does want his — and to go past a four-year college and receive his master's, and he laughs about his PhD. He wants to be very independent. And Hunter realizes that in order for him to be independent, he will need supports, but those supports are to be with him and not for him.

And he has learned over the years to be a great self-advocate and to know when to ask, and it's OK to ask. And he's not asking all the time for help as much as maybe some guidance, and that that's OK. And we all need help. And so he's growing, and as he matures, he pretty much can let anyone know what he needs and goes from there.

CHAPTER 4: Strategizing to Maximize Access to Services

MCGOWAN: In order for Hunter to be able to stay under the school district, he could not physically take his diploma. So the school district holds onto it. They'll actually generate it when we do finalize and leave that district, but this allows for the district to still give him what he needs. and that we can make it a community-based program. It does not mean we have to stay in the high school.

And I think that was an interesting thought, too, with Hunter. When we first started to discuss the planning about this, Hunter was like, I'm not sure. And I said, this does not mean that you're going to be getting up and getting the school bus and going into the high school building at all. It just means that they will still be responsible, that you can still receive the instruction that you need in the specialties as far as braille, orientation mobility, deaf hard of hearing supports, speech and language.

But you will have a community-based program, but we will not have that diploma. We do have a certification of completion for right now. He did have enough credits to graduate, but we as a family chose to hold off until the age of 21 to have this extra time to prepare.

Hunter has always stated that he wanted to go to college. And so we thought, OK. Let's see how that's going to go, and what type of caseload he can handle. And so knowing that he would not be in the building of high school, we designed our gap year which allowed him what I always call the three C's of college, career, and community. And so together our team sat down and figured out a way that he could attend our local community college.

NARRATOR: We see a page from that IEP was created for Hunter's gap year that outlines the measurables regarding his post-secondary education and training goal, which is described this way.

Quote, "Hunter's goal is to attend a four-year college to pursue his interest in working in the field of sociology or social work." End quote.

Below that is a matrix showing the services and activities that Hunter will engage in, the location of the activities, the projected start date and the anticipated duration, and the persons or agents responsible.

So for example, under the service activity heading, Hunter is expected to meet and communicate with school personnel, the Office of Disability Resources, from a post-secondary institution to receive academic supports and accommodations available to students with dual sensory impairments.

The location at which the activity will take place is listed as [? Westmorland ?] County Community College. The projected beginnings date is May 2014, and the anticipated duration is until May 2015. The persons or agents responsible are Hunter McGowan and the [? Norwin ?] School District.

MCGOWAN: He started first semester with two college credit classes and then on two days a week, he was able to have some job exploration at a retired assisted living home. And then, we always kept our Friday for orientation and mobility. Hunter received the great gift last summer, a guide dog for the blind, Atlas, and so they've been working some mobility with the guide dog, which is different, of course, than his cane use. He's learning how to take public transportation.

NARRATOR: A photograph shows Hunter working with an orientation and mobility instructor out in the community. Hunter appears to be using binoculars or a monocular to look for an approaching bus. Atlas is on the sidewalk at Hunter's feet.

MCGOWAN: He's just been able to utilize a year that we as a team design community-based, still under the school district with the related service instruction, but everything else is as he would be a 19-year-old with college and some job exploration.

So we have had a successful gap year, and Hunter is 19. And so we're actually having a team meeting in the next month to discuss and considering having a second gap year to still receive the related instruction that's available for him.

Again, Hunter's goal is to become a full-time college student, so this will give us some time to support him to achieve a full time courses as a college student. Also, we need more practice, if you will, for the public transportation, of course the instructional of braille and any support he may need academically through deaf hard of hearing. So we're really thinking why not?

We have the time. It will allow for more growth. We continue to plan. We continue to tap into the agencies, and he's got his whole life to deal with that.

So it's been a good year, and I think that we're very fortunate As a student with a disability to have a little extra time. And although I really feel that someone could say, let him go. I just think that he will benefit. We all benefit from a little more education, and he has the time.

CHAPTER 5: Advice for Transition Planning

MCGOWAN: It was very important early on for me to have support and understanding and share and to talk, and so I needed to rally a team around myself and my son. And I had a personal goal for my son that I would advocate for him, and I would advocate with him. And I would advocate behind him.

And those strategies were very helpful, and so as we brought a team together and — to be quite honest, no one had taught the student with deafblindness. Hunter was unique, as all students with deafblindness, in his learning. We knew we could learn. We just knew it was going to be very different than the way you and I may learn, and so it was very important to have everyone leave any egos at the door. But to please bring in their expertise.

NARRATOR: As an illustration of just how many people were involved in Hunter's transition planning, we see a copy of the page from Hunter's gap year IEP listing the 18 people who were in attendance at one quarterly meeting.

MCGOWAN: We were very fortunate. I work with families that sometimes do not have a educational team that's quite as understanding or even willing to try something outside of the box or new or different. But there's a lot of research and there's a lot of information that I think as parents and/or families can share with the teams, that a fifth senior year, or a gap year as we call it, does not mean that it has to be within a school building. In fact, it is supposed to be a community-based program.

And it makes only sense to figure out what the student needs, likes to do, how it will build upon. Whether that student is looking to post-secondary education or is going right into a career or job employment. Or even if a student needs much more support, you want to find a work program that they're doing of activities that they like to do and want to do. And so we were very fortunate, and I know a lot of times there are families that do not have such a supportive team behind them. And I just think that one and the most important things was to continue as a parent to educate myself, so that I felt as much of a partner and a team player.

NARRATOR: Updating Hunter's story, he is now a freshman at a four-year college. We see a picture of Hunter and Atlas together on the floor in Hunter's dorm room.

On one side of the room is Hunter's bed. On the other is Atlas's crate. They both appear to be quite happy.

Patti is a regular blogger on our Paths to Transition site.  She writes about many of the experiences discussed here.  Read her blog!

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