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Natural support participation in the IEP meeting. Parents and educators described a

wide range of participation in the IEP meeting, and likewise there were varying experiences with inclusion of individuals from outside the school in the IEP meetings. Case managers, behavioral health professionals, vocational rehabilitation counselors, and state agency representatives, were among the paid supports that were identified by parents and educators as being the most regular outside individuals to attend. The presence of many paid supports is not always perceived as helpful. One mother related,

The team meetings were huge because we had PT [physical therapy], OT [occupational therapy], speech people, Voc Rehab, vision rehab - because he’s visually impaired...and so we had the huge team of people when we were sitting around at IEP meetings, and I felt like it was a really negative experience. Like they’re making a plan but there’s not anybody that helps you see that through, and as a parent you’re trying to get your kids through school (P2).

Educators related that they encourage parents to invite others to participate in the IEP meeting. One educator recounted that when parents gave their consent, the school always invited Vocational Rehabilitation or case managers or in contentious situations – advocates. Natural supports, however, were rarely at the table, “They don’t really bring [other] parents. They don’t really bring friends” (E12).

Another educator saw outside agencies as a connection to natural supports in the community. She said,

We’re fortunate to have the [Vocational Rehabilitation] transition counselor come in a couple times per month… And for us as a community connection piece, that one’s huge. So that’s our [workplace] situational assessments, that’s our workforce support pieces, it’s our visits to colleges. That’s our number one go to. If we have a very complicated situation and family, we ask them to attend IEP’s, and they will if we need their input (E3).

One parent also saw paid supports as a route to connect with the community.

We went through Vocational Rehabilitation services. We had a woman that he met with prior to graduating high school, and it’s a good program but you have to know how to navigate it. She was really helpful because this is what she does for a job... They meet with us, decide what he likes and what he would like to do for a job eventually. And then his person goes out and seeks [trial] employment for him.... His last assessment was at the animal welfare society, and he loves animals. So they take him to places that they think he might like. Vocational Rehab services pays him, and the place of employment gets a wonderful volunteer. So, it’s a win-win for

everybody. What he did last time is - he particularly likes dogs - so he was walking dogs, cleaning cages and filling dog treats and things like that, and it was wonderful because they pick him up and drive him there. (P4)

One educator who regularly encouraged parents to bring others as supports to the IEP meetings stated,

They were encouraged to bring whatever teams they wanted, you know, clergy, neighbors, family, relatives, anybody. That’s not always the case, because a lot of special ed feel intimidated by that. I encouraged that. I said, ‘you need to feel

supported, that you can have someone you can talk to after, after this’, but oftentimes they would just be shell-shocked. They didn’t know, especially if it’s their first time. (E11)

Another educator said, “We invite case managers, so they’re involved with anyone that has a current role or future role or needs to get up to speed. We always invite all of them to the meetings, and they come.” When this educator was asked about individuals in other roles, she added, “they pretty much have a professional affiliation, and they’re actually trained to help the student and the parent move forward with...a work plan” (E7). An educator in a school that had actively promoted more community involvement in transition planning measured success like this, “Good news, we’re starting to see as many college apps as SSI apps” (E4).

A mother who had to pursue a due process hearing while her son was in high school in an effort to get his needs met, related that since that time she has become an information specialist with a disability organization and regularly gets invited to attend IEP meetings with students at the same school that her son attended. She sees big improvements in the school process as a result of her advocacy on behalf of her son. She said, “I’d like to think we made a difference” (P1).

Youth perceptions of inclusion. For natural supports to participate in transition

the Maine Integrated Youth Health Survey (2017), there is an even more foundational need – for youth with disabilities to believe that they matter to people in their communities.

This research looked at the responses to the survey question, “Do you agree or

disagree that in your community you feel like you matter to people? (Maine Integrated Youth Health Survey, 2017). This question was selected as it brings the direct voice of youth - speaking on the subject of natural supports available in the transition to adulthood - into this research. The responses to this question by youth who either self-reported as having a

disability or “being limited in any activity because of a disability or long-term health problem including physical health, emotional, or learning problems expected to last 6 months or more” were compared with the responses of youth who did not self-report disability or long- term health problem. The findings are shown in Figure 4.1. Student responses on the question of do they feel like they matter to people in their community were markedly different for youth with and without disabilities. Less than half (49.39%) of youth who reported having a disability indicated that they felt they mattered to people in their communities compared to over two-thirds (67.22 %) of youth without a disability. This number crept up only slightly to 50.89% for youth who indicated that they were limited in an activity because of disability or long-term health problem and compared to over 63% of youth who did not identify as having a limitation due to disability or long-term health issue.

Figure 4.1. Students who feel like they matter to people in their community.

This data reinforces that young people with disabilities do not perceive that they are valued members of their community. Whether correct or not, this belief is a barrier to identification of natural supports for inclusion in the transition planning process. Youth who do not believe that community cares about them are unlikely to identify community members as natural supports and resources.

Finding 3.2. Parents more likely to come to IEP table when good rapport with