This study examines how parents, families, and students with moderate intellectual disability perceive their role in planning for post-secondary life of their children.

Abstract

This study examines how parents, families, and students with moderate intellectual disability perceive their role in planning for post-secondary life of their children. Adequate preparation for post-secondary life is important due to aging caregivers and other challenges such as physical, psychological, social and financial challenges. As a result, without adequate preparation, the future of those they have been caring for over the years becomes bleak. Ten parents of students with various disabilities identified as students with moderate intellectual disabilities and ten students with moderate intellectual disabilities completed a survey for this study. Areas explored in the interviews are academics, employment, independent living, community living, leisure, and socialization. Analyses of data collected from parents, family and students’ responses, indicate their perception of planning for post-secondary life of children with moderate intellectual disabilities.

Keywords: MOID, IDEA, IEP, TRANSITION

The Problem

Introduction.

      As a teacher with years of teaching experience in a Moderate intellectually disabled classroom, I have often wondered why parents, families, and students with intellectual disabilities are not well-prepared for the transition from high school to post-secondary life. This deduction stems from a common response of parents and families to issues relating to the Individualized Education Program (IEP), transition planning, and goals. At every Individual Education Plan (IEP) and transition meeting, that I have held; I have always asked the question: “where will you like your child to be or what will you like your child to do after high-school?” The parents, family or student’s answer usually is “stay at home with me or just stay at home.” This is a concern to me and some of my colleagues in the school who have found themselves in a similar situation, thus, making it imperative that I attempt to unravel the influencing factors. Sometimes we call some of our students who have graduated to find out where they are or what they are doing, and we find out they are at home despite all the information provided to the parents for a successful transition to independent post-high school life. For some Parents, families, and students, the IEP and transition meetings are just another annual meeting for setting transition and short time annual goals which may not be talked about again till the next IEP and transition meeting.

The purpose of this study, therefore, is to examine how parents, families, and students with moderate intellectual disability perceive planning for post-secondary life for their children with moderate intellectual disability (MOID). It also aims at understanding the reason(s) for parents and student’s apathy towards planning, as well as the limiting factors for accomplishing the desired planning process for adequate post-secondary life of their children. This brief qualitative survey will help give an insight into what can be done by special education teachers and school administrators to ensure that students are able to access and gain maximum benefits from available services and programs as they transition into young adulthood. Young adults with intellectual and other disabilities who graduate from high school encountered obstacles when accessing services from outside agencies, colleges, and employment organizations (Baker, 2013; Blacher, Kraemer, & Howell, 2010; Canha, Owens, Simoes, & Gaspar de Matos, 2013; Carter et al., 2013; Kerr, 2013.) Parents of adult children with disabilities may have difficulty to fully understand the services available to their children once they transition from high school programs to post-secondary school life. At the same time, some parents attributed their lack of understanding of services to limited access to general information or guidance from school personnel (Grigal et al., 2011.) Preparation for post-secondary life starts with transition and future planning process. Future planning assessment is the first step of all transition assessments. Future planning assessment is pivotal in assisting parents, students and teacher to develop a plan to attend career goals and other lifestyle goals after high school. If future planning is properly carried out, it will assist students and families to identify their interests, preferences, and goals that will prepare them for life after high school. Transition services help adult students with disabilities prepare for life after high school in the following areas: independent living, employment, Community living, socialization, leisure skills, and postsecondary education. The future planning process for students with disabilities are planning and at the same time problem-solving. The future life of a child with disabilities is very important and that is why transition planning starts early in the life of a child with disabilities.

.

Definitions

Transition Assessment- Transition assessment is the “ongoing process of collecting data on the individual’s needs, preferences, and interests as they relate to the demands of current and future working, educational, living, personal, and social environments.” (Sitlington, Neubert, & Leconte, 1997.)

Moderate intellectual disability (MOID):

SPECIAL EDUCATION SUPPLEMENT GLOSSARY (2014) defines

A moderate intellectual disability is defined by the GaDOE as intellectual functioning ranging from an upper IQ limit of approximately 55 to a lower IQ limit of approximately 40; and deficits in adaptive behavior that significantly limit a child’s effectiveness in meeting the standards of maturation, learning, personal independence or social responsibility, and especially school performance that is expected of the individual’s age-level and cultural group. (P. 8)

Future Planning: This is a process of addressing areas of significance to the individual with a disability, their family, and other planning team members. This process allows team members to actively work to help them develop life skills and also provide real life experiences to be independent, happy and successful.

IDEA –Individual with Disability Education Act.

Individual Education Plan (IEP): The Individuals with Disabilities Education Act

(IDEA) requires that any students receiving special education services in a public school

must have an IEP. The IEP is a legal document that includes the learning goals and type

of services students will receive (Bryant-Davis et al., 2012).

Research Questions:

What are the perceptions of students and parents of MOID students concerning effective planning from high school to post-secondary life?

What are the limitations to a successful post-secondary life planning from the parents of MOID student’s perspective?

Why do MOID students and their parent have apathy towards post-secondary life planning.

Review of Related Literature

In a research article by Burke, M., Arnold, C., & Owen, A. (2018), 388 parents participated in a web-based survey on what they consider to be limitations to future planning for their children with intellectual disabilities. Through the survey, they were able to express their view about the challenges they face with planning for their children life after high school. They identified the barriers they faced such as lack of available services, financial challenges, the reluctance of family members, lack of time, emotional nature of future planning, inertia, and lack of family members to be caregivers as barriers to planning for the future of their children with disabilities. From their perspective, many parents see future planning for their IDD children as a dream and not a definitive process. Over 50% of the participants reported engaging in only three areas of future planning activities. Only a few of the parents have planned for their child post-secondary life. They Some of the participants reported lack of appropriate residential, employment, and recreational supports, as a challenge for them while other participants reported financial barriers and limited of information as a barrier to planning for their child post-secondary life. Others showed apathy by not responding. Parents who are more likely to engage in planning for an effective transition to postsecondary life where their child with disabilities will live their best life are those with more formally educated or connected with disability training and support. Some of the barriers are (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g)

a lack of family members to be caregivers. About 39% of parents said their greatest challenge to planning was getting information on how to develop a care plan for their children with disabilities (Burk 2018). Some parents felt they required more in depth knowledge of the transition process and postsecondary choices available to their child and how they will meet their child’s support needs. Some of the parents did not understand their transition-planning process and their role. 104 participants provided write-in responses regarding barriers to future planning. The majority 61.54% of participants reported that lack of services was a barrier to future planning. Parent and family involvement in the transition planning process is important to achieve post-secondary success for young adults with disabilities. On the other hand, parents who attended the graduate school of some form of transition training were more likely to report engaging in future planning activities. The limitation of this study is that they did not engage a more diverse group for the survey. The participants were primarily White and highly educated parents.

Some of the parents expressed apprehension with learning how to navigate the adult agency support systems. Other parental concerns include (a) identifying residential living options, (b) determining available employment opportunities, (c) locating and planning for social outlets for their adult child, and (d) finding available agency assistance (Chambers, Hughes, & Carter, 2004; Cooney, 2002; Hanley-Maxwell et al., 1995; Whitney-Thomas & Hanley-Maxwell, 1996).

In a study by Blue-Banning, M., Turnbull, A. P., & Pereira, L. (2002), perspectives of Hispanic parents of youth and young adults with disabilities transitioning from high school to adulthood, their hopes, and expectations for their child’s future is examined. The parents will like service delivery for their children with disabilities to recognize the cultural and linguistic difference of Hispanic children with disabilities. A focus group interview of 38 Hispanic parents of youth and young adults with developmental disabilities (e.g. cerebral palsy, autism, cognitive disabilities was conducted in four states. They had difficulty articulating their expectations for the future of their children with disabilities. Their vision is to support the preferences of their children characterized by their participation in the community. While some of the parents will like their children to live in a supervised home, others will like them to be independent if they have to live outside. Parents considered the future for their children in three categories-future living, employment, and leisure options. Most of the parents would like a caregiver in the future for their child. They also will like a transition process that will include activities of daily life that will make them less dependent on other people, improved communication, self- and vocational skills, the limitation of this study is that those who participated in the study had received services by attending workshop, they may not represent the typical Hispanic in the community. Parents have divergent views about the most appropriate future residence for their son or daughter. Some indicated that they anticipated their son or daughter would live in the family home. Others envisioned their child living either in a supervised, residential care facility, or living independently in his or her own apartment or home. comments implied that living at home was a natural course of life. It was clear that many of these parents were concerned about what would happen to their son or daughter when the parents could no longer care for their child. A central part of their vision was finding someone who, in the future, would provide a nurturing environment for their child. Several parents voiced the desire to find a future caregiver who would take care of their children when they are not there.

Parental hopes for the future included the improved ability in activities of daily life that would allow their child to become less dependent on others. These skills included eating, dressing, and personal hygiene-skills that would enable them to manage by themselves. Parents did not often articulate a specific occupation; however, it was evident that they considered it important for their children’s preferences to be considered when getting and job and for such a job to be consistent. Hispanic children with disabilities will like to remain in the family home. Their responses indicate the influence of not only the Hispanic culture but the multicultural contexts in which these parents live. To provide effective support services to individuals from culturally diverse backgrounds and their families, research must continue to provide a clearer understanding of the perspectives of Hispanic parents concerning their experiences during the transition and their preferences for culturally responsive support.

In a study by Camarena, P. M., & Sarigiani, P. A. (2009), The results from these semistructured interviews revealed that both the adolescents and their parents have clear postsecondary educational goals but have significant concerns about the readiness of postsecondary institutions to meet the adolescents’ needs

Results from Camarena and Sarigiani’s 2009 study, limited or total absence of social skill were found to be one of the concerns of many young adults with ASD and their parents. For an effective and successful transition, social skills training is necessary for transitioning students with ASD into PSE environments. Students with ASD tend to have poor social skills which result in isolating themselves. This isolation can continue into adulthood ASD students have different needs depending on the level of the spectrum, either on the higher end of the autism spectrum or those with more severe impairments. Parents/families of those who are higher functioning spectrum start to plan for post-secondary school years of their children by requesting for both information and programs that can help support them during their post-secondary life. For the adolescents’ group interviewed in this study, social challenges played an important role in educational success especially in the transition from secondary to postsecondary education settings. At the same time, some of the students interviewed for this study had difficulty explaining their disability, their strength, and weaknesses. The mothers noted their children with ASD were likely to experience anxiety or resist changes needed to transition to post-secondary education. The limitations of this study are that this study is not able to capture the diverse needs and issues of this population with sample participants of only 21 families.

In a research study by Griffin, Megan M.; McMillan, Elise D.; Hodapp, Robert M. (2010). investigated what family’s transition-aged students with intellectual disabilities consider when making decisions about postsecondary education (PSE) for young adult children with intellectual disabilities. Family members of young adults with intellectual disabilities who responded to the survey were180. Most of the parents identified limited knowledge of information and guidance among the many barriers limiting their understanding of PSE options. Such barriers include the absence of information and guidance from educators and school system, financial difficulty, poor communication from educators, and different agencies and services. There were safety concerns over their child’s vulnerability being taken advantage of by other people. Of the 108 respondents, 94% were parents or guardians, and 91%were female; in all, 87% of respondents were the student’s mother. The majority of respondents were White (88%); remaining respondents were 8%, Black was 1%, Hispanics were 1%, Asian/Pacific Islander and others were 2% The majority of respondents were 40 years or older (87%); from urban areas.

From the perspective of the respondents, PSE opportunities are more beneficial for their transitioning children, but that they did not think that educators encouraged this option. Most respondents (73%) lacked information and guidance about planning for PSE. While poor communication has been well-documented as a general barrier to effective transitions to adulthood, this issue was addressed specifically within the context of PSE planning.

As an alternative to such poor post-school outcomes, a movement numbering over 150 schools across the United States has arisen to provide these young adults with inclusive post-secondary education (PSE) options. The limitation of this study is that parents’ responses were not confirmed by records, student observations, teacher reports, or other sources

In this study, Ankeny, E.M., Wilkins, J., & Spain, J. (2009) examined transition process as perceived by four mothers: They viewed transition as an ongoing quest for options and opportunities for their children with disabilities. The four mothers had children with moderate intellectual disabilities whose age ranged from 18 to 25. They want their children to be happy, independent and successful. Some mothers in the study stated their perspective as follows: “. . . beyond school. We know that school ends, but I think as parents we tend to live in the today and the now, but transition should start our brains thinking about what life is going to be like when school ends and then to make a picture of what that’s going to look like and how we’re going to get there.” Ankeny et al.. One of the participant’s concern was the safety of her daughter with disabilities, They want transition process needs to start early in a child’s life which can lead to independent living. The participating mothers viewed the transition process as an ongoing quest for options and opportunities for their children. The parents knew how to navigate transition process because the professionals availed them with much-needed information., All of them considered transition planning as a process that should be started early if a meaningful out is expected. All of them viewed the transition process from a positive point of view because they had been to seminars. The participants communicated often with the teachers. The mothers view the transition to post-secondary life as preparing them for real-world things, which take their children with disabilities a long time to achieve. The mothers felt they were supported by teachers who enhanced their children’s visions, abilities, and future outcomes. The limitation of the study is that only four women were interviewed, and they do not represent the views of that gender whose children have disabilities of various types.

In a research article by Natalie A. Henninger and Julie Lounds Taylor(2014) examines what parents of Individuals with disabilities (IDD) consider to be a successful transition to

Adulthood. Parents worried most about their child with disability’s safety, happy residential situation; strong social networks; and effective use of his free time in their adult life. From the parent’s perspective, postsecondary goals should be more than independent living, employment, and friendships. Goals like physical health, psychological well-being, and transportation which are not always addressed in formal transition planning should be included. The participants in this study were 198 parents of individuals with disabilities (IDD) who answered an Internet survey about transitioning to adulthood. Majority of respondents were mothers About 89.3% of the parents reported that their child with disabilities was living at home with them. The parents most common transition concerns were their child’s interactions with others, and the ability to care for them self, responsibility, and sexuality. The result of this study found Nearly two thirds (65.2%) of participants identified vocation to be necessary for a successful transition.

.

Since this study was an internet survey based, it is not a representation of all families of individuals with IDD. A sample survey of families with a wider range of educational, socioeconomic, and cultural backgrounds may be different or more varied perspectives on a successful transition to adulthood for individuals with IDD… The people who conducted the survey do not know the exact disabilities of the people who…….

The perspectives of a successful transition to adult life may differ between parents of individuals with IDD and individuals with IDD themselves.

may be different or more varied perspectives on a successful transition to adulthood for individuals with IDD. writers of the article. The people who conducted the survey do not know the exact disabilities of the people who

The perspectives of a successful transition to adult life may differ between parents of individuals with IDD and individuals with IDD themselves.

8

Margarita Bianco, Dorothy F. Garrison-Wade, Romie Tobin, and Jean P. Lehmann(2009), in this qualitative study, interviewed nine families who gave a vivid description of their experiences, responsibilities, and roles they played in supporting their children’s transition into adult life. They perceived their roles as balancing between advocating for their young adult children’s needs while promoting their independence and self-determination. During high school transition meetings, some parents felt helpless when they were faced with unfamiliar procedures and unexpected obstacle with adult service agency network. Some parents expressed their apprehension at having to learn how to navigate through adult agency support systems and frustration with the lack of collaboration with them. Parents expressed their concern at the post-school program options discussed during transition meetings which did not parallel their child’s capabilities. Many of the families in this study reported not being prepared to navigate the adult service agency network. It is probable that the participants in the study had not envisioned what supporting their children to achieve adulthood would entail. Some of the parents felt they were ill-equipped for the new responsibility and the realities that awaited them when their child transitions from high school to adult life. Some of the participants in this study felt they had limited opportunities to understand the new roles they would play after their children graduates or exits from high school. The limitations of this study are as follows: The number of parents who participated in the study was 9 and this number limits the ability to generalize their views with the perception of other parents who did not participate in the study. All the participants were Caucasian, monolingual English speakers and their views may not reflect other non- Caucasians. It is likely the participants in the study did not envision the extent of supporting role their children would need to achieve relative independence in their adult life.

Kendra L. Williams-Diehm and Patricia S in this article, (‎2007) surveyed 103 students receiving special education in Texas to assess their perceptions of the transition planning process. Students surveyed represented those with mild to moderate disabilities. They completed a ten-question survey on their knowledge of and opinions of the transition planning process that was utilized at the high school. In the interview, students were asked what they desire for (1) employment, (2) post-secondary education, (3) independent living, and (4) recreation and leisure.

This high school where the survey was carried out served 3,695 students of which 15.4% of these students received special education services. The high school population was considered economically disadvantaged. The ethnic population of the school district was 39.9% Anglo, 34.8% Hispanic, 24.6% African American

However, students should be leading the meeting and guiding all decisions by his or her senior year in high school. These results indicate that high school students were not well informed about the transition process. They were not able to differentiate between their annual IEP meeting and their transition plan. The students were asked the date of my last transition planning meeting and 83.5% of the students surveyed could not respond to this item. After the interviewer responded to this question stating that transition planning is required for all students ages 16 and up and may have been part of the IEP, only eleven of the students could respond with a question asking whether the transition planning meeting was done at the same time as the annual IEP meeting. Only six (5.8%) students or knew the date of their transition planning meeting without asking about

Only 10.7% of the students interviewed knew the purpose of transition plans. Unfortunately, 74.9% of the students stated they did not know the purpose of a transition plan and did not attempt to answer the question. (Kandra et al….) When their interests and preferences for their individual transition plan were compared to the content of their actual transition plan to ensure student desires were being recorded, they did not match. About 54.5% of the transition plans described the career choice of the student. The students were expected to name a form of recreation other than “hanging out with friends.” But they did not do so. Most of the student believed their impute in the transition planning was valued. The study found that 81.6% of the parents were in attendance at the transition

Results of this study indicate that students need guidance and assistance from their teachers, administrations and all team players to ensure the transition process is working so they can achieve the desired outcome that best meets their …………., The results of this study indicate that there are areas were areas that need improvement in the current transition process.

Limitations Although roughly 18% of the students served through special education were surveyed, only 11% of the actual transition plans were examined.

9

This study Mason, C. Y., Mcgahee-Kovac, M., Johnson, L., & Stillerman, S. (2002) examines options that can help students to be adequately prepared for the post-school experience. There is a concern for lack of significant improvement in post-school outcomes for students with disabilities has been an enduring concern in special education (Hasazi, Gordon, & Roe, 1985; Lock & Layton, 2001; Thompson, Fulk, & Piercy, 2000). Students have reported that they are not involved in their individual education plan (IEP) process. They do not feel they own their IEPs. From the student’s perspective, they believe need self-direction to be adequately prepared for post-school experiences and be able to make important daily and life decisions. Student-led IEPs was introduced to this school four years prior to this study and 18 (42%) student participants and four (40%) of the teacher participants had prior experience with student-led IEPs. 43 students, in grades 9-11 participated in this study. About one-third of the students who were involved in student-led IEPs were interviewed. 42% percent of the students have had two-year experience leading their IEP meetings. Students indicated that transition plans helped them set goals for life after high school. From their perspective of transition planning, they were able to describe the positive impact of planning on their attitude towards the future. All the 35 students interviewed were able to describe their disabilities, and the impacts their disabilities have on their performance in specific areas. The students with prior training on the student-led IEP made statements their knowledge of the challenges they have.

Less favorable outcomes occurred in studies of post-secondary education and students

Anderson, K. A., McDonald, T. A., Edsall, D., Smith, L. E., & Taylor, J. L. (2016). examined the 31 high-school students with autism spectrum disorder (ASD) perception of adulthood. They had two research aims: (a) to report students’ postsecondary expectations in terms of school, work, friendships, and living arrangement and (b) to describe how our sample defined adulthood. The majority of students expected to attain traditional markers of adulthood after high school. The interview participants were asked what they expected life to be like after high school. About 90% of respondents expected to further their education, 62% planned to work, 42% planned to leave their parental home for independent or semi-independent living arrangements. Two of the participants did not expect to have friends while 48% expected to either maintain current friendships or make new friends after high school. About 43% of adolescents expected to continue with their parental and 13% of those students expect to move out eventually. The result of this study concluded that nontraditional adult roles should be incorporated in transition plans and services, high schools need to prepare adolescents for the uncertainties of adulthood, and community-based services that help all students attain employment, living, and social transition outcomes should be incorporated into planning.

13

Rueda, Monzo, Shapiro, Gomez, and Blacher (2005) used Sixteen Latina mothers of young adults with disabilities participated in the study which involved various focus groups. The study examined attitudes, belief, and meanings of transition as perceived by Latina Mothers of Young Adults with developmental disabilities. The Latino mothers viewed their children as an intricate part of the family. They believed that educators did not recognize the importance of their personal knowledge of their children, rather they promoted belief in professional expertise.

, with varied education qualifications. Latinos are seen as a homogenous group with a significant population and Spanish Language. They have lived in the united states between 8-40 years. In this study, only 4 out of the 16 mothers were employed. Participants were paid a $40 honorarium immediately following their participation. In the focus group, they were asked to express their opinion of transition as a home-centered, sheltered adaptation as opposed to a model emphasizing independent productivity. Life skill like bathing washing plates, clothes, cooking l was a high priority for the participants. The mothers were concerned about their children being taken advantage of by other people. The viewed care of their young adults with disabilities as a mother’s own responsibility while she was alive, and the responsibility of another family member if she was no longer able to provide care. Some of the mothers indicated that the professionals did not give them detailed requested information about their child’s services. Some mothers felt that there was significantly less supervision in these work placements than there had been at school. Related to this concern was the possibility of discrimination against young adults with disabilities (et al…..) They believe they are the best advocates for their children with disabilities. Also, the mothers believed that educators did not recognize the importance of their personal knowledge of their children, rather they promoted belief in professional expertise. These mothers did not view employment, now or in the future, as a major aspiration for their young adults with disabilities.

This study provides further evidence that there may be multiple perspectives on transition, some of which may conflict with the views of transition. The participants were recruited from a community agency known to the agency. By design, focus groups, are not generally representative, nor should any attempt be made to generalize from them. Also, the participants are few and may not represent the views of all Latino mothers. different ways of understanding the issues discussed.

In this study, Agran, M., & Hughes, C. (2008). piloted a tool that required students with intellectual and other disabilities to provide input their involvement in IEP development and their opportunities to learn self-determination strategies. Participants in this study were 17 students who attended classes for students identified as having moderate to severe intellectual disabilities from high-poverty urban high school. The survey developed for this study was on the basis of a review of literature in self-determination and student involvement in the IEP process and transition-related activities (e.g., Agran et al., 1999; Wehmeyer et al., 2000). Only 4 out of the 17 participated reported having knowledge of IEP. Majority of the students had never been taught to lead IEP meeting. Students actively involved in their transition goal planning are most likely to achieve those goals

The study revealed that majority of the students reported that they were taught to speak up for themselves, only a few did so during their IEP meetings because few learned how to lead their IEP meetings. Majority of the participants did not know what an IEP was, and almost half of them did not attend their own meetings. The report from this study revealed that the majority of the students reported receiving some instruction on one or more self-determination strategies, few students were provided instruction in having an active role in the IEP process

Zachary Rossetti, Donna Lehr, Dana Pelerin, Shuoxi Huang, Leslie Lederer. 2016. “Parent Involvement in Meaningful Post-School Experiences for Young Adults With IDD and Pervasive Support Needs..” Intellect Dev Disabil, Volume 54, Issue 4, pp. 260 – 272.

In this study, Zachary Rossetti, Donna Lehr, Dana Pelerin, Shuoxi Huang, Leslie Lederer. (2016) examined parent’s role in their children’s post-school experiences, their perception and involvement in post-school experiences by eight young adults with intellectual and developmental disabilities (IDD) and pervasive support needs. The participants were eight parents (seven mothers, one father) of young adults with IDD and pervasive support needs who resided in four US states in the Northeast Zahary et al sought to determine how meaningful the parents thought their children’s lives were and what the concept of ”meaningful” meant to them. In their theoretical framework, meaningful meant “being active or busy in the community, and independent from one’s parents with peers, staff, or others who love the individual; engaging in a variety of interest based, age-appropriate, typical, and purposeful activities; resulting in the individual seeming happy, being stimulated, and making a positive impact on others”. Achieving post-school success should not be limited only to parents of intellectual and developmental disabilities (IDD)children whose parents have the resources, knowledge, and experiences to advocate for them but all parents should be able to achieve post-school success for their children. Schools and adult should develop individualized supports would lessen the reliance on parental advocacy for positive post-school outcomes by young adults. Service agencies should help teach all parents about the option and process for the effective post-school outcome. These parents were active, problem solvers and fierce advocates in children’s post-school experiences. They developed busy schedules filled with a variety of activities their children liked. They consistently advocated for them for what they wanted for their children even.

The participants possessed resources to advocate for their children, navigate the adult service system, and creatively solve problems that other parents do no

The limitation in this study is that participants are few and therefore not representative of the general public. A larger and more diverse participating families may result in additional experiences and perspectives

Collette Sosnowy, Chloe Silverman and Paul Shattuck.

In this study, 21 parents and 20 adults with ASD were interviewed about their experiences on transition to adulthood in order to understand their perspective of what they consider as desired out come and how they plan to achieve those out comes. From parent’s perspective, outcome is based on their child’s individual abilities, needs, and desires. Young adults with autism face significant difficulties transitioning out of high school.   A total of 22 person were interviewed (10 parents, 12 young adults), 16 by phone (11 parents, 5 young adults), and 3 (young adults) were conducted via email. From this study parents expressed divergent views about their child transition plan to post-school life. Some of the parents expressed concern about the long-term security, safety, getting needed support and quality of life of their child disability. Some of the parents who are concerned about existing supported housing options, want to be able to customize their child’s living environment. Financial support for their child is another concern to parents. The transition plan to independent living indicated the challenges their child is likely to face with full independent living, like keeping up with daily task and self-care. Some of the parents feared their child will be isolated if they did not want to socialize or had trouble reaching out to others. Others said that their child would prefer to stay at home

12 young adults participants live with their parents, others want to live away from home . life. Some f the need significant support from their families. Young adults and parents had similar perspectives on the challenges of pursuing college and the desire and need for services. Most students needed academic accommodations, such as extended test taking time, and some used other services, such as tutoring.

Parent and Sibling Perspectives on the Transition

to Adulthood

Cynthia R. Chambers, Carolyn Hughes, and Erik W. Carter

Vanderbilt University

In this study…. investigated parent and sibling perspectives concerning the transition of family members with significant cognitive disabilities to adult life. Eight parents and eight siblings of high school students completed a survey addressing transition outcomes. The student participants were enrolled in seven comprehensive high schools., From the perspective of parents and siblings, they believe they lacked knowledge of post-school options for persons with disabilities, though they rarely discussed post-school options with each. They reported playing more active roles in the transition process than did siblings. Future employment and independent living were important to the respondents. Parents and siblings predicted that after high school their family members with disabilities would (a) work in segregated employment settings (i.e., work activity or day center, sheltered workshop, enclave) for adults with disabilities and (b) live in their parents’ homes. Cynthia et el….. The limitation to this study parents and sibling may have identified only postschool outcomes of which they were knowledgeable

Lehmann The purpose of this study is to explore high school student’s participation in transition related activities. From the study students and mother did not observe transition related process occurring both in school and at home. Qualitative study was carried out for a period of 9 months. The study focused on 12 students with disabilities. Participants were drawn from both urban and rural schools. Eight students were 16 to 18 years of age, two were between 14 and 15 years. Their mother’s perception is that they did not participate in formal activities to help their children with disability get ready for their future. Mothers assisted their children with transition process like facilitating friendship. The students in the study did not have any knowledge of post school out comes. There were few opportunities for students with disabilities to practice skills related to self-advocacy, empowerment and leadership activities. The mothers expressed frustration at not being give enough information about transition process and planning by the teacher.  the study concluded need for students with disabilities to possess some level of self-determination in order to reach future goals. Because the teachers had limited communication about transition related activities with the parents, the parents tried to achieve some of the same goals through the nature of parenting instincts. The mothers believed there were not a lot of opportunities available for their children. The report indicated the students were not observed to be involved in the transition process. From the students perspective, they had little knowledge or interest about postschool outcomes. They were passive recipients of transition-related information and did not really engaged in transition-related activities.

Conclusions drawn from the study are that (a) transition is more of a promise than a reality for many due to limited resources and confusion about roles; (b) transition meetings are an important venue for linking students’ involvement to the transition process; and (c) although teachers and mothers desire student involvement, achieving this involvement will require changes in everyone’s role. It is important for both the teachers and administrators to keep a consistent open communication with parents and constant readjustment of transition plans. A lack of transition-related opportunities in school means students have no choices to make.

Cheak, Z. N. C., Teti, M., & First, J. (2015). used two focus group to explore the perspectives of youths with ASD and their caregivers by examining their social, education, vocation needs , service needs, barriers and coordination. The result of this study indicated that both groups experienced fear and anxiety about transitioning with a lot of needs that are not met.

The youth with disabilities does not know how to accomplish their future goal and they are hesitant to talk to caregivers. The result of this study concluded that there are unmet needs for the caregivers and youth with ASD. When the families are more involved in the lives of their young adults with disabilities successful outcomes will be achieved and maintained. The participants in this study were youths with ASD and their caregivers. Young participants were 13 and their age ranged from 15 to 22 years while the caregivers were 19 were primarily female (n = 17) and lived in the same home as the youth. Majority of the caregivers were parents of a youth with ASD. They live in the same home together. Both caregivers and youths expressed concern and anxiety due to limited availability of service like social, educational and vocational assistance services. Caregivers helped youth with various tasks like cooking, driving, cleaning, finance management and basic chores. There is lack of educational, employment opportunities for adolescents with ASD. They did not receive adequate a transitional service.

From the perspective of the participants, education and vocation needs were on the uppermost in their mind.

The purpose of the study by Rabren, K., & Evans, A. M. (2016). was to examine how parents of children with disabilities’ perceived transition and received assistant for improvement. Three focus groups of parents of students with disabilities in one southeastern participated in this study. There were 23 parents representing 26 students with disabilities because some parents had more than one child with a disability. Six areas of parental concerns about transition weir identified: (a) transition preparation, (b) integration, (c) adult services, (d) parent support, (e) advocacy, and (f) professionals’ roles. s parent 21 The participants were apprehensive over their child safety.Other parental concern were self-awareness, community awareness, socialization, communication, employment, Independent living and education . One of the parent participants asked “Do I prepare for being at home full time with him?. Sharing this concern, another participant stated, “We want him to be secure and to provide him some skills for future living. We want them to gain future independence to know they’re taken care of so we can rest easy and in peace” (Parent 22). However, the limitations of transition planning included a lack of readiness to transition to life post-high school with an emphasis on establishing relationships, managing societal pressures and coping with a lack of community resources The result of this study indicated there is need for transition professionals to collaborate with parents of children with disabilities complete and seamless services because of the list of transition concerns they have..

Packing the Parachute: Parents’ Experiences as Their Children Prepare to Leave High School.

Whitney-Thomas, Jean; Hanley-Maxwell, Cheryl

Exceptional Children, v63 n1 p75-87 Fall 1996

Whitney-Thomas & Hanley-Maxwell (1996) examined parents’ experiences as their children prepared for life after high school and found that parents of students with disabilities share some of the same concerns as parents of children without disabilities. From the parents perspective, they indicated their concern about their young adults with disability being able to live independently, make good decisions and manage their finances. The families of the students with disabilities have been integrally involved as they plan their futures in both college and in finding a job (Morningstar, 1997). The parents were actively involved as advocates in the transition process but found that time period filled with challenges and unknowns.

Pleet. A., & Wandry, D. (2010). Building transition partnerships with families of youth with emotional or behavioral disorders. In D. Cheney (Ed.) Transition of Secondary Students with Emotional or Behavioral Disorders (pp.79-118). Champaign, Illinois: Research Press.

SURVEY——

This survey has been developed to obtain responses from parents /families and adult students with moderate intellectual disabilities about their personal /future plan for themselves/their children for post-secondary life. It is also aimed at understanding the views of students with moderate intellectual disabilities/their parents about planning process for their post-secondary life. This study explored 9 young adults with moderate intellectual disabilities and their parents/family on planning for post-high school life. An understanding of their perspective will help us as teacher to understand areas of improvement because it is all about the student with disability living their best life after high school.

1. What are the parents’ means of accessing information to achieve their desired and expected post school goals for their young adults?

2. What is the relationship between (1) parental involvement; -rewrite

(2) access of information regarding the transition

process, options, and outcomes for youth with moderate intellectual disabilities; and (3)

parents’ desires and expectations for their young adults’ postsecondary outcomes?

Participants and Setting

The participants in the study include(n=9) parents of (n = 9) current high school students who are receiving individualized education plans (IEPs) and transition plans for various disabilities under the category of Moderate intellectual disability. (ASD, Down syndrome, Intellectual developmental IDD). (n=4) of the participants are diagnosed with Autism……(ASD)of different levels of severity, (n=2) are identified with down Syndrome, (n=1) has traumatic brain injury, (n =2) is identified as having intellectual developmental disparity. The students are in their senior year of high school. They were recruited from two MOID class in one high school. (B high school in Di county school district). The students who participated were (n=1) Vietnamese, (n=2) White and (n=6) Black. The high school where the survey was administered was notified of the need for the study. Consent was obtained from the school administrator, and the parents of the students to participate. Paper surveys were administered in the school by the research student. Parents completed and returned their paper survey. Participants were chosen based on their proximity to the researcher and their willingness to complete the paper survey