El año del cambio político

naturally see a role for the sibling in the IEP meeting. During the interviews, one parent described how a sibling had helped her brother with a disability to be more included in the school, but when asked about whether this same sister attended her brother’s IEP meeting,

the parent answered that she did not and then turned to the researcher to ask why the sister would be included. This illustrated the limited connection between the presence of a natural support and her inclusion in the student’s IEP meeting for transition planning.

Youth perception of the role of natural supports. One of the questions posed to

students by the Maine Integrated Youth Health Survey was “I have support from adults other than my parents” (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 4.2. On this question of adult supports, just over half (56.65%) of youth with

disabilities reported having an adult other than a parent that they turn to for assistance. This compared to over 70% of youth without a disability who indicated they had support from adults other than their parents. When looked at through the lens of youth who reported a limitation in an activity because of disability or long-term health problem, these numbers got even worse with only 51.74% indicating that they had support of an adult outside of a parent compared to nearly 68% who did not identify as having a limitation in activity due to

disability or long-term health issue. Overall, this data indicates that youth with disabilities do not perceive having access to adult supports, something that would have significant

Figure 4.2. Students who have support from adults other than parents.

This finding was further supported by the data generated at the initial convening of the Youth Advisory Group (2019). As seen in Figure 4.3.

Figure 4.3. Youth advisory group – Report out on initial convening.

The Youth Advisory Group generated a list of topics about which they either wanted more information or further discussion. Not surprisingly, these focused primarily on aspects of the transition process to adulthood and included: (1) Vocational rehabilitation; (2)

Independent living; (3) Disability self-disclosure; and (4) HIPAA - the Health Insurance Portability and Accountability Act. The youth also wanted to gain an understanding of (5) Available resources, and (6) Their rights and responsibilities as they reach adulthood. Additionally, the group identified a need to gain more knowledge about disability and disabling conditions - some of which are more apparent than others (Youth Advisory Group, 2019). While “available resources” could include natural supports, the lack of identification of anything specific to natural supports is further indication that youth are not aware of the role that natural supports could play in transition planning.

Evident in the responses from the youth is a clear desire to continue to meet as a group on a regular basis - as often as monthly for a full day. They also discussed meeting remotely via video-conferencing. Meeting minutes reflect that many young people

exchanged contact information at the day’s conclusion. This strong desire to stay connected also was expressed through a wish to have a social media group where the young people could continue to talk to each other between meetings. The youth also stated that they wanted the group to be youth-led with a format that allowed more time for talking together in lieu of formal presentations which indicates that they are interested and looking for ways to build supportive networks.

Despite diverse membership and only meeting that one day, the youth were able to set some clear goals and desired outcomes for the group’s work. Some of these goals were focused on assisting others to be successful in transition: (1) Sharing our stories of transition and, (2) Mentor other youth heading into high school. Others were focused on raising youth voice for policy change: (3) Be a youth voice, (4) Break down silos, and (5) Meet with

legislators and write letters to political leaders. The third category of goals focused on educating themselves and increasing their own knowledge of disability: (6) Create a game to learn about different disabilities, and (7) Get educated on transition resources/process (Youth Advisory Group, 2019). These goals show a strong interest in gaining more knowledge about transition resources so that they can both advocate for needed changes and help to smooth the path for those younger youth who are following behind them.

The results of the Maine Integrated Youth Health Survey reveal a significant

discrepancy in how youth with disabilities feel valued in their communities when compared to their peers without disabilities. Additionally, their responses indicate that they have far fewer adult supports in their lives than non-disabled peers. The Youth Advisory Group, although newly-formed, represents the concerns of a diverse group of youth and young adults with disabilities in Maine. Through examination of documents generated at their initial convening, such as minutes and flipcharts, these findings highlight that transition and related issues are the main concerns of these youth. These include: (1) sharing stories of transition; (2) learning about transition resources and (3) advocating for their adult needs among others. These findings also demonstrate that these young adults are interested in serving as natural supports to other youth through peer mentoring. Additionally, they reveal a need for a deeper dive into youth experiences through additional study, which is addressed in Chapter 5.

Finding 4.3. Natural supports are missing from pre-service and in-service