BY VALERIE LEITER
In 2004, Congress added new transition requirements to the Individuals with Disabilities Education Act (IDEA), striving to improve youth outcomes after high school. These new requirements say that the Individual Education Program (IEP) must include “appropriate measurable postsecondary goals” and the “transition services… needed to assist the child in reaching those goals.” They also give students the right to participate in planning once their IEP meetings focus on transition from school. It has been 10 years since Congress made this change. But what does it mean for a student to participate in transition meetings? Fifty-two youth with a variety of disabilities (learning, social, intellectual, and sensory) and their parents shared their transition experiences with me. Youth played a wide range of roles during IEP meetings, ranging from not attending at all to playing an active decision-making role. Overall, there were four levels of youth participation: nonparticipation, technical participation, vocal participation,
and empowered participation.
Just over one-quarter of the young people were “nonparticipants” who did not attend the meetings. Nonparticipants were more likely than other youth to have intellectual disabilities. Some nonparticipants did not want to attend the meetings because they felt that they were boring, while others were happy with having their parents represent them. For example, Sean* was content because his parents attended the meetings and his IEP supported his goal of working after high school. A few didn’t participate because their parents felt that it wasn’t appropriate. Janet, who had two daughters with autism, explained why she had not brought her daughter Cali to her IEP meetings the year before, when transition planning began: “Cali will attend her first IEP the upcoming year. And the only reason for
that, as well, I feel that… my girls, they grew up, they know, you know, there’s some difference, but they didn’t grow up under an umbrella like, ‘Oh, I’m autistic.’ They didn’t grow up with a rubber stamp like, ‘Oh, this is…’ So for them, you know, it’s just like when you talk to kids at certain stages about certain things. You know what I mean?” Janet
worried that the autism label could affect Cali’s perception of her own abilities because of how she heard school staff discussing her condition, and delayed Cali’s participation until she was older.
Fifty-two youth with a variety of disabilities (learning, social, intellectual, and sensory) and their parents shared their transition experiences with me.
* All names are fake names that the youth and parents have chosen for themselves, so that they can recognize their own words in anything that I write or present.
Youth who were “technical participants” attended at least part of the meetings but did not speak. About one-fifth of the youth were technical participants. For Ricardo, who was not verbal, this was maximum participation. His mother Maria, explained: “Yes, he was [at the meeting]. I know his right. They bring him and he was a member. The teacher bring him and he was sitting in the wheelchair and the teacher put something like a little kinds of cookie and he was calm and focused and focused on the meeting… He’s part of the whole thing, I guess.” Some youth did not want to
attend their IEP meetings and refused to do more than be in the room. Damien, who had been labeled as having behavioral issues, resented having to be there. He said that the adults talked at, not with, him: “I think everyone has something to contribute to me, like they speak to me at those meetings.” His response was to tune out. “I remember one meeting I went to a while ago, I was sitting there and I was really tired, and I just fell asleep like this on the
back of this chair. It gets that horrible, I just can’t stay awake.” A few “technical participants” were frustrated about not having a voice. Darren, who was hard of hearing, explained that the adults in the room spoke to one another, preventing him from being able to follow the discussion. He “mostly sat and listened,” feeling excluded from the
conversation about him and his future.
Youth who were “vocal participants” spoke for at least part of the meeting. They reported being asked about their
vision of the future and specific goals during the meetings. Frederick, who had Asperger syndrome, felt that his role in the IEP meetings was to provide the vision. He explained that “they don’t need me for until the last couple of minutes when they’ve come up with the nitty-gritty.” He expected the adults to work out the details, in terms of concrete goals and services. Most of the youth with intellectual disabilities who were vocal participants spoke only when adults asked them questions. William’s parents and teachers facilitated his participation as much as possible. His mother explained: “He’s been there. And when he is there, the conversation is much slower. So he has played a role. He has said, I like music, I like to cook, I like this. But beyond that, we have to do a lot of kind of scaffolding to help in choices.” William felt that much of the conversation consisted of the adults in the room urging him to become more involved in planning his future.
Only five of the 52 youth were “empowered participants,” who spoke extensively on their own behalf. Empowered participants negotiated their own IEP goals and services actively. Three of the five youth had physical disabilities, one had an intellectual disability, and the fifth had Asperger syndrome. Behind each empowered youth was an adult who mentored him or her into self-advocacy. These mentors were parents, an aunt, and a rehabilitation professional, showing that many adults could empower youth to participate in transition planning. Justin, who had a physical disability, felt that there was a real difference between his earlier IEP meetings and the ones that focused on transition: “IEP meetings you don’t really care about, because they – they ask you, ‘Hey, what do you want to do when you grow up?’ and you say, ‘I want to be this and that,’ and that’s the end of your input. But the transition meeting’s very important. They ask you everything from, ‘Okay, do you want to go school?’ ‘Where do you want to live?’ ‘How do you want to do this?’” Justin was mentored by a rehabilitation professional who also had a physical disability.
Justin explained, “she was the person that kept me hanging on.” She helped him understand the purpose of the transition plan and think through what he wanted to do after high school and the services that his school should provide to prepare him for that life. Justin and his mother were there, as were three staff members from his school and his mentor. He said, “it was a bunch of us… a team effort.” When I asked what role he played, he responded: “I
played a big part. If I didn’t like what people were saying, I’d say, ‘I don’t like what it says about my doing this,’ and [the school staff member] would be like, ‘Okay, let me word it differently.’ I’d be like, ‘I still don’t like it.’ [Laughs.]” Justin was one of two youths who had his own copy of his transition plan and offered to share it with me. Kayla was the other youth who had her own copy of her transition plan. She was the only empowered youth who was female, and the only one with an intellectual disability. Kayla’s aunt mentored her into taking the primary advocacy
role for herself in the transition meetings. Kayla said, “I got a chance to talk and my aunt helped me with it, that’s why it says shared decision making. And that was my aunt and I, so we kind of did that.” Kayla’s aunt, Kelsey, explained that it did take substantial work to help Kayla prepare for her IEP meetings: “Kayla has to take notes. She has to write down what she wants and then she has to read them. And I actually make her read them. I actually tell her, ‘Kayla, read what’s on the paper.’ Because once she gets there, she becomes intimidated. And so if she reads what’s on the paper, even if she just looks at the paper and just reads it, at least they’re her words and not just mine.”
The other three youth who were empowered participants in their transition meetings were mentored by their mothers, and were college-bound. Teddy and his mother said that they cowrote the vision statement on the plan,
which specified that he was preparing for college entry. Teddy explained: “I guess you could say I built it, now they support it, if you want to say that.” He felt good about the plan, and said that it fit his goals completely. Frankie felt that he and his mother made a good team, even though the planning process had been difficult. He described himself
as “an active and willing participant in conversations about [transition]. All things pertaining to my well-being.” Like Teddy, Frankie’s vision was to attend college. His mother, Celie, reported that Frankie’s school had not been very helpful: “They’ll be like, ‘What’s your five-year goal,’ or whatever. I mean, they’re helping a little bit with getting an evaluation for assistive technology, with that Dragon software. But otherwise, no, they haven’t been very helpful.” In Celie’s opinion, “They just want to cut him loose when he’s 18 and stop paying for him. Yeah, that’s their plan, get rid of him as fast as possible. [Laughs.]” Celie and Frankie were working with an advocate to push the school system to provide services that would support Frankie’s goal to attend college.
Youths and parents typically had mixed feelings at best about attending IEP meetings. Youths’ participation in the IEP meetings added yet another layer to an already complex interaction with school staff. It was not always clear to youth why they were there or exactly what was happening, and it was often uncomfortable to be surrounded by adults talking about them. Parents at times felt as though their attention was divided between the advocacy work they needed to do in the meeting, and the additional organizational and emotional work that they needed to do to include their children in the discussion.
Yet youth’s participation in their transition meetings encouraged them to think about what they wanted from adult life and how their school might help them achieve those goals. Youth talked with their parents about what they
needed and some voiced their opinions during the meetings. A few got to practice self-advocacy, taking part in making decisions about their lives rather than leaving it to adults to do it on their behalf. There was a growing awareness that the transition meetings were a place where youth could develop knowledge and skills that would
help them in their adult lives.
The parents who spoke with me wanted the parents who were coming up behind them to know more about the transition process, so they wouldn’t have to reinvent the wheel over and over again. Based on the experiences of youth and their parents who shared their transition stories with me, here are some questions that parents and youth might want to ask:
• Is the school district starting transition planning when the youth is 14, as required under IDEA?
• Are students invited to participate in IEP meetings when transition planning begins?
• If youth do not attend the meetings, how is the school facilitating their participation in transition planning?
• What do youth understand is going on in the meetings?
• What roles are youth playing in these meetings?
• Is any “scaffolding” needed to help youth participate?
• Do youth feel as though they have ownership of their transition plans?
Youth and parents can find resources to help them with transition planning at: http://www.ncset.org/publications/ viewdesc.asp?id=423 http://www.parentcenterhub.org/repository/iep-transition/#student •
ABOUT THE AUTHOR:
Valerie Leiter is Professor of Sociology at Simmons College. She is the author of Their Time Has Come: Youth with Disabilities on the Cusp of Adulthood, and multiple articles about children and youth with disabilities and their families. She thanks the William T. Grant Foundation for funding this work.
Source Exceptional Parent Magazine