Little is known regarding the extent to which schools are implementing transition programming for students with severe mental retardation and other related issues: parent expectations of transition outcomes, postschool vocational outcomes, and parent involvement in the transition process. These issues were examined with 52 families who had transition age sons or daughters with severe mental retardation. Results revealed that (a) schools are providing a variety of instruction in the area of transition; (b) parents' ideal views of vocational outcomes are not always consistent with their realistic views; (c) for students who have exited the school system, the majority (54%) are working in segregated environments; and (d) families are very involved in the transition programming of their sons or daughters.
Editor in charge: Steven J. Taylor
Preparation of young adults with disabilities for high school graduation and the world beyond has become of interest to educators, parents, and other service professionals. This stage of the life course is commonly referred to as transition. The U.S. Department of Education statistics indicate that over 5 million children ages 6 to 21 are receiving special education services under the Individuals With Disabilities Education Act—IDEA (U.S. Department of Education, 1999). Of these, approximately 200,000 are exiting the school system each year and entering the adult world (Wehman, 1996a). Although the period of transition has been increasingly studied, relatively few investigators have examined this period specifically in reference to students with severe mental retardation. Most research on transition is comprised of quantitative postschool outcome surveys that utilize large samples to assess broad outcomes, for example, vocational status, number of hours worked, wages earned, place of residence (Gallivan-Fenlon, 1994). For students with severe mental retardation, in the transition literature that does exist, researchers typically describe “how to” implement a transition program as opposed to examining how transition programs are actually implemented or experienced (Gallivan-Fenlon, 1994). Little is known regarding how schools are preparing individuals with severe mental retardation to leave the school system and what outcomes are desired by those who support them.
Moreover, there is a paucity of research in which investigators examine family involvement in the transition process (Kraemer, Blacher, & Marshal, 1997). Although we know that families are critical to the well-being of young people with severe mental retardation, we understand less regarding the role of families in transition planning, parent expectations, and desires for their sons or daughters after exiting high school as well as how parent involvement relates to positive transition experiences.
This study was designed as an intensive interview of parents who have sons or daughters with severe mental retardation who have recently exited, or will soon be exiting, the school system. Our primary aim was to gain an increased understanding of the transition experience for this population. In particular, we wanted to assess the extent to which schools were implementing transition programming for young adults with severe mental retardation, what aspirations and expectations parents had for their sons and daughters once they exited the school system, and how parents were involved in the transition process.
From initial follow-up studies (e.g., Hasazi, Gordon, & Roe, 1985) to more recent research, findings have demonstrated the need for schools to develop systematic transition services for all students with disabilities (Blackorby & Wagner, 1996; Collet-Klingenberg, 1998; Grigal, Test, Beattie, & Wood, 1997; Hasazi, Furney, & Destefano, 1999). School programming variables associated with positive school outcomes for youth with disabilities include a functional, community-referenced secondary education curriculum (Alberto, Taber, Brozovic, & Elliot, 1997), community-based instruction (Falvey, Gage, & Eshilian, 1995; Inge, Wehman, Clees, & Dymond, 1996), vocational training/employment during high school (Benz, Yovanoff, & Doren, 1997; Phelps & Hanley-Maxwell, 1997), vocational courses (Fabian, Lent, & Willis, 1998), and social skills instruction (Moon & Inge, 2000). However, although it is known that such variables contribute to more successful transition experiences, we do not know to what extent they are actually implemented in transition programming for individuals with severe mental retardation.
Employment after high school is a primary transition outcome. However, the employment outcomes for students with disabilities, particularly severe mental retardation, are somewhat discouraging (Haring & Lovett, 1990; Kregel & Wehman, 1989; Mank, Cioffi, & Yovanoff, 1998; West, Revell, & Wehman, 1992). For example, Blackorby and Wagner (1996) found that 37% of youth with mental retardation were competitively employed 3 to 5 years postgraduation, but these figures include all levels of mental retardation and part-time as well as full-time employment. Focusing specifically on those with moderate to severe retardation, Revell, Wehman, Kregel, West, and Rayfield (1994) found that 39.1% were involved in supported employment.
Even though the employment status of young adults with disabilities is often used as a proxy for “successful transition,” the particular type of employment status deemed most beneficial is not so clearly delineated. Many researchers and professionals in the disability field (e.g., Rusch, Rusch, & Johnson, 1991; Wehman, 1996b) have argued that the only successful employment criterion for students with disabilities is supported employment. Supported employment, a vocational option where individuals with disabilities work in integrated environments receiving “real” wages and support from a job coach, is utilized primarily by individuals with mental retardation, the majority having mild or moderate mental retardation (Mank et al., 1998; Wehman & Revell, 1997). Individuals with severe mental retardation are less represented in this employment model than most advocates would hope, perhaps indicating the need for more resources, supports, and parent education in this area.
Independent living, or “launching” the young adult with disabilities, is another major component of transition (Blacher, 2001; Halpern, 1985, 1993). For transition-age-individuals without disabilities, one typically conceives of the young person moving out of the family home within a few years after completion of high school. However, when one examines the independent living status of young adults with mental retardation, only 4% of these young people are living independently right after high school, with 24% living independently after 5 years (Blackorby & Wagner, 1996). Once again, this study consisted of individuals with all levels of mental retardation and did not specifically focus on individuals with more severe mental retardation. In a study that was focused exclusively on individuals with moderate or severe mental retardation, Kregel, Wehman, Seyfarth, and Marshall (1986) found that 8% moved out of the home immediately after completion of high school, though not necessarily into independent living situations. Like the aging parents of adults with mental retardation (Freedman, Krauss, & Seltzer, 1997; Seltzer & Ryff, 1994), these parents of adolescents and young adults are relatively reluctant to have their offspring move out of the family home.
One national study conducted at the University of Illinois at Chicago (Braddock, Hemp, Parish, & Westrich, 1998) indicated that 12% of individuals with mental retardation and developmental disabilities were served in a residential facility. Of this group, 51% were served in residential settings that contained 6 or fewer persons, and 14% were served in group homes for 7 to 15 persons. Thus, the majority of individuals served in residential settings were in a type of group home environment. This is consistent with the philosophy that adults with mental retardation should be supported in community environments. However, these investigators did not address which types of living environments parents most desire for their transition-age young adults.
When discussing various transition outcomes for individuals with disabilities, particularly severe disabilities, investigators must take into account parental perspectives (Miner & Bates, 1997; Wehmeyer, Morningstar, & Husted, 1999). McNair and Rusch (1991) examined parent expectations of postschool outcomes for individuals with mild or moderate disabilities, 14 to 25 years of age. Forty-eight percent imagined the young adult holding a job in the community, with 29% working in a sheltered workshop and 7% not working at all. Fifty-five percent of the parents imagined the young adult living at home after his or her education was completed.
In one of the few studies in which parent vocational aspirations for adults with severe mental retardation was examined, Hill, Seyfarth, Banks, Wehman, and Orelove (1987) found that parents chose a day activity center as the preferred vocational placement. These parents did not envision their young adults performing the same tasks as persons without handicaps, and they only mildly endorsed the statement, “Work should be a normal part of life.” The developmental level of the adult was strongly related to the vocational aspirations of the parents.
Researchers who have examined differences in the overall transition expectations of parents of high school students with and without disabilities have found that parents of children with disabilities have more concerns regarding vocational options, future residential environments, social networks, and needs for assistance (e.g., Whitney-Thomas & Hanley-Maxwell, 1996). This discomfort may reflect a realistic view of the postschool world, which often offers limited adult services and greater uncertainty than occur in the public school years (Ferguson, Ferguson, & Jones, 1988). It is conceivable that if families were more involved in the transition process and were given more opportunities to play an active role, their feelings regarding postschool outcomes would be more favorable, and perhaps even the outcomes themselves would be more positive.
Unfortunately, families are not often given the opportunity to play an active role in the transition process. In one of the few studies in which parent involvement in transition programs of students with severe mental retardation was addressed, McNair and Rusch (1991) found that parents were significantly less involved in transition programs than they desired to be. Seventy percent desired involvement, whereas only slightly more than 30% experienced it. Furthermore, Morningstar, Turnbull, and Turnbull (1995) found that the young adults themselves (albeit with levels of functioning much higher than severe mental retardation) endorsed more parent involvement as critical to their transition process.
Although guiding models for studying parent involvement in the transition process are rare, Blacher, Baker, and colleagues (Blacher & Baker, 1994; Blacher, Baker, & Feinfield, 1999) have examined behavioral, cognitive, and emotional aspects of involvement of parents with offspring who have disabilities and were living away from the family home. They have reported reasonably high involvement in families in the first 4 years postplacement (Baker & Blacher, 1993; Blacher & Baker, 1994; Blacher et al., 1999). Following this framework, an empirical examination of what kinds of transition activities parents engage in would constitute behavioral involvement; their thoughts about the transition process and its efficacy would constitute cognitive involvement, and their anxieties about the process, emotional involvement.
Our purpose in this investigation was to look more critically at the period of transition for a group of young adults with severe mental retardation. The specific questions used to guide this investigation were as follows: (a) To what extent are schools implementing transition programming for young adults with severe mental retardation? (b) What are parents' aspirations and expectations of transition outcomes for their sons and daughters with severe mental retardation? (c) What are postschool vocational outcomes for those with severe mental retardation who have exited the school system? (d) What is the level of parent involvement during the transition period?
Participants were 52 families with sons or daughters who had severe mental retardation and were between the ages of 20 and 24 years. These families were selected from a longitudinal sample of 89 families with young adult children who had severe mental retardation. All families had been secured through the Regional Center system in California, a state-wide network in which all identified children with disabilities are registered. Out of the pool of 89 eligible families, 52 were randomly chosen. If a family was not able to be reached (e.g., phone number was no longer in service, family did not return phone call) or elected not to participate once contacted, then a new family was randomly chosen from the remaining pool of eligible families. In order to obtain the 52 families for the study, 80 families (90%) from the pool of 89 were contacted (or contact was attempted). Analyses comparing the final sample of 52 families to the original pool of 89 revealed no significant differences on the demographics assessed (e.g., young adult age, adaptive behavior, parent age, ethnicity, or socioeconomic status—SES).
Parent demographics are shown in Table 1. In most cases mothers were the respondents. The mean age of mothers was 50 years (range = 40 to 68), and the mean age of fathers was 52 years (range = 36 to 70). Most of the families were two-parent. Over 75% of the sample was Anglo. Almost two thirds of the mothers were employed, and 87.5% of the fathers were employed. Socioeconomic status was measured using an occupational index (Stevens & Cho, 1985) that assigns numerical scores to professions. Low SES was designated by scores below 30; middle SES, scores between 31 and 60; middle-upper SES, scores from 61 to 80; and upper SES scores above 80. The mean scores for mothers and fathers in this study were 35.8 (range = 11 to 64) and 38.8 (range = 11 to 88), respectively, indicating a primarily middle class group of parents.
The target individuals were 52 young adults with severe mental retardation. Their mean age was 21 years (20 to 24), with an equal number of males and females. Although all young adults qualified for Regional Center services in California under the primary diagnosis of mental retardation, additional diagnoses were reported by the parent. The most commonly reported diagnoses were cerebral palsy (37%), Down syndrome (14%), and autism (14%). Seventy-five percent of the young adults were ambulatory or partially ambulatory. The majority still lived at home with their parents (90%), although half had exited the school system at the time of the interview. During their school years, all the young adults attended public schools in California. For those 26 young adults who had not exited school at the time of the interview, 14 attended segregated special education classes all day, and 12 spent some of their day in the community (i.e., at a job site, practicing skills in the community) and the rest of the day in segregated special education classes.
The young adults evidenced significant difficulties in adaptive behavior as measured by the Vineland Adaptive Behavior Scales (Sparrow, Balla, & Cicchetti, 1984). The mean standard score for the adaptive behavior composite was 24.1, with a range of 20 to 58, indicating a low-functioning group overall. The developmental age equivalency for the group was 3.17 years. For the sample as a whole, relative strengths were in the socialization domain (mean standard score = 28.8), with the area of greatest need being communication (mean standard score = 21.5).
The measures administered pertained to (a) family and young adult characteristics, (b) school programming/transition experiences, and (c) parent involvement in transition planning.
Family and young adult characteristics
The Family Data Sheet is a demographic questionnaire that has been used previously with these families (e.g., Blacher 1985, 1992). It is used to obtain the demographic information reported earlier in Table 1.
Vineland Adaptive Behavior Scales (Sparrow et al., 1984). The Vineland was administered to mothers as a structured interview. The measure contains an adaptive behavior composite and four subscales: Communication, Daily Living Skills, Socialization, and Motor Skills. As reported by Sparrow et al., alphas for these subscales range from .79 to .86, with an alpha of .92 for the adaptive behavior composite. For the purposes of the present study, only the adaptive behavior composite was used in analyses.
Scales of Independent Behavior–Revised, Problem Behavior Scale (Bruininks, Woodcock, Weatherman, & Hill, 1996). The Problem Behavior Scale of this instrument provides a General Maladaptive Index comprised of eight problem areas organized into three broad maladaptive behavior indexes (Internalized, Asocial, and Externalized). Each of the eight behaviors is rated according to frequency of occurrence and severity. Maladaptive Index Composite Scores, used here, can range from 10 to 70, with lower scores indicating more serious maladaptive behavior. The mean for “normal” samples is 0 (standard deviation [SD] = 10). Scores below −20 are classified as moderately serious, scores below −30 are classified as serious, and scores below −40, as very serious. In the present sample, 14% evidenced moderate to serious problem behaviors.
School programming/transition experiences
The first instrument used in this category was the Transition Experiences Survey, designed specifically for this study. It is a 48-item interview protocol through which we could examine the young adult's current and previous involvement in programming related to the transition from school to adult life. The questionnaire includes both closed- and open-ended questions. Closed-ended questions consist of dichotomous (yes/no) and Likert scale items. Domains surveyed included: Employment (e.g., types of paid and nonpaid work experiences received), Community Living (e.g., level of involvement in programming designed to increase independent and functional living skills), Socialization (e.g., level of involvement and access to social/recreational activities), and Family Life (e.g., level of involvement in family activities such as going out to dinner, and visiting relatives). Parent expectations regarding future employment options and future community living environments were also assessed. Some sample dichotomous survey items are:
As a result of your young adult's school programming, has he/she received any paid work experience either in the community or on the school campus? To your knowledge has your son/daughters' school program incorporated instruction to facilitate the transition from school to adult life? Do you see your son/daughter moving away from home within 5 years of his/her completion of public schooling?
An example of a Likert-scale item is “My young adult child engages in social activities with peers without disabilities.” Each Likert-scale item is rated on a 5-point scale (5 = strongly agree, 1 = strongly disagree). This instrument is really a guided interview protocol. Although the questions have face validity, it does not contain scales appropriate for reliability analyses.
We used the Parent Involvement in Transition Planning instrument, a 17-item questionnaire constructed specifically for this study. It was designed to assess parents' level of involvement and opportunity to be involved in the transition-planning process. Questions consist of dichotomous and Likert-scale items designed to investigate three types of involvement, adapted from concepts reported in Blacher et al. (1999): Behavioral Involvement (8 items, e.g., kinds of involvement parents actually had in transition planning, such as participation in Individual Transition Plan [ITP] meetings, conversations with teachers, and observing potential vocational placements), Cognitive Involvement (3 items, e.g., how much parents thought about various aspects of transition— such as work, community living, and access to social opportunities during the transition process), and Emotional Involvement (3 items, e.g., how much parents worried about various aspects of transition during the transition process).
Mothers were interviewed in their homes, except for six interviews that were conducted over the phone because the family lived out of the geographic region. Most interviews were scheduled at a time when the target young adult could be present to facilitate the completion of the Vineland and so that he or she could participate in the process if possible. The primary interviewer for this study was the first author; a second female interviewer assisted. Interviewers received training in the administration of instruments and in procedures, safety, and etiquette.
The interviewer read the questions for all parent measures and recorded responses by hand; administration of the Transition Experiences Survey and Parent Involvement in Transition Planning were also audiotaped. This was done to assure accuracy of the information reported for later coding and to record any qualitative information provided by the parent during the interview. On average, each interview lasted 2 hours.
Results presented are primarily descriptive, due to the small sample size and the density of the information obtained. Where appropriate, chi-square analyses were used to compare parents' idealistic versus realistic perspectives on postschool outcomes for their sons or daughters and to compare exited versus nonexited students on various transition variables. Finally, utilizing t tests, we examined differences in level of parent involvement in transition planning for youth who had exited the school system versus those who had not.
To What Extent Are Schools Implementing Transition Programming for Young Adults With Severe Mental Retardation?
Sixty-four percent of parents indicated that they were aware of the federal mandate for transition planning. When parents were asked whether their son or daughter had an ITP when in high school, 57.7% of parents reported yes, 13.5% reported no, and 28.8% responded that they were unsure.
Over 85% of the young adults received instruction in daily living skills and social skills. Most individuals (88%) also received community-based instruction. Over 50% of the individuals received campus work experience. Some of the activities that individuals were involved in were cleaning tables in the classroom or in the cafeteria, shredding paper or collecting cans for recycling, and doing janitorial work or landscaping work on campus. Types of instruction less often received by this group of young adults included involvement in vocational classes (41%), being administered a vocational interest inventory (21%), being taught a career unit (19%), and being involved in job-shadowing (6%).
Examination of the work experience received by the young adults indicates that 47.1% did paid work during school and 74.5% did unpaid work. Table 2 delineates the types of paid and unpaid work experiences received; work categories are not mutually exclusive. Over a third of those in paid work were employed (at some time) in a restaurant-type setting, and as many worked on the school campus. Yet over half had jobs that fell into the “other” category. Many of these jobs were idiosyncratic and “one of a kind” positions. For instance, one young man made special equipment for dog walking. For unpaid work experience, the majority of individuals (75.7%) worked on the school campus. A few individuals were involved in other unpaid work experiences, such as working at a community center (e.g., a retirement home), working at a restaurant (e.g., Sizzler), or working in retail (e.g., Target).
What Are Parent Aspirations and Expectations of Transition Outcomes for Their Sons and Daughters With Severe Mental Retardation?
Regarding employment, when parents were asked whether they would like their sons or daughters to work in the future, 63.5% reported that they would, 11.5% reported that they were unsure, and 25% reported that they did not want their sons or daughters to work. Parents were also asked to choose among a list of possible work options for their sons or daughters 1 to 3 years after exiting high school. The options ranged from most to least “normative.” Parents were first asked to choose an ideal work placement and then asked to choose a realistic work placement. The responses are indicated in Table 3. Ideally, the majority of parents (71.2%) would like to see their sons or daughters working either independently or in an individual supported work environment. Fewer parents reported sheltered workshops and day activity centers as ideal work environments; no parents reported remaining at home as being ideal. Realistically, however, many more parents imagined their adult sons or daughters being employed in day activity centers and sheltered workshops. Statistically, chi-square analyses revealed significant differences between parents' idealistic and realistic vocational expectations, χ2 (1, N = 52) = 11.16, p < .001, thus indicating that fewer parents realistically expect that these individuals will work independently or with support in the community.
Regarding living arrangements, 5 young adults (9.6%) lived outside the home at the time of the interview; an additional 28.9% of parents had seriously thought about having the young adult move out and/or had visited some residences. The majority of the families (61.5%), however, reported that they never or seldom thought about the young adult moving out of the home. Consistent with this, when parents were asked about community living expectations for their sons or daughters, only 36.5% felt that their sons or daughters would live out of the home within 5 years of exiting the school system. The remainder of respondents were unsure (5.8%) or confident (57.7%) that their sons or daughters would remain living at home 5 years after exiting high school.
When asked to choose from a list of possible future out-of-home living arrangements for their son or daughter, few differences were found between parents' ideal and realistic choices. As shown in Table 3, under ideal circumstances, 42.3% of the parents reported that a group home would be where their son or daughter would live after leaving home. Other parents perceived of a supported apartment (17.3%) or living with a sibling (17.3%) as ideal. Even under ideal circumstances, few parents envisioned their sons or daughters living with a significant other or living with a friend. Realistically, the majority of parents envisioned their sons or daughters living in a group home. Chi-square analyses revealed no significant differences between parents' idealistic and realistic living expectations for their sons and daughters.
What Are Postschool Vocational Outcomes for Those With Severe Mental Retardation Who Have Exited the School System?
Half of the sample of young adults had exited the school system at the time of the interview. Of these 26 young adults, 19% were in supported employment (including both enclaves and individual placements), 54% were in sheltered workshops or day activity centers, and 27% remained at home all day. Adaptive behavior of the young adult was significantly correlated with type of vocational outcome, r = .60, p < .001, with those having higher adaptive behavior in supported employment. Maladaptive behavior was not significantly correlated with vocational outcome.
Although not intended as an original research question, we became interested in determining whether the group of 26 young adults who had exited the school system differed from the group of 26 young adults who were still in public school on transition programming received and parent expectations of transition outcomes. More parents of the young adults who had exited the school system reported that their son or daughter had an Individual Transition Plan as compared to young adults who were still in public school (69% and 42%, respectively). However, the results of chi-square analyses revealed no significant differences between these two groups on such items as paid employment, unpaid employment, parents' realistic vocational expectations, and whether or not the young adult would live out of the family home within 5 years of graduating from high school.
What Is the Level of Parent Involvement During the Transition Period?
The majority of the 52 families reported high behavioral involvement. Specifically, regarding school activities, 88.5% reported that they were part of the transition team, 86.5% had phone or written contact with the teacher(s) at least once a month, 96.2% felt that they were an equal partner in decision-making, and 88.5% felt that they were the ones who made all the final decisions regarding transition programming. With regard to work-related activities, 59.6% of parents were currently involved (or had been involved) in finding vocational placements, and almost 50% of respondents reported that they would like to be more involved in finding potential vocational placements. There was less involvement in finding alternative residential placements for their sons or daughters; only 25% were currently involved (or had been involved) in finding community living arrangements. However, 25% reported that they would like more involvement in these areas.
With regard to cognitive involvement, parents thought most about vocational placements, with 59.6% reporting that they often or frequently thought about vocational placement, and 23.1% reporting that they sometimes thought about it. Access to social activities and friends after leaving the school system was the second most frequently considered area (30.8% often or frequently, 38.5% sometimes). The last item was parents' thoughts regarding a living environment for their sons or daughters after exiting the school (21.1%, often or frequently; 15%, sometimes).
Analysis of emotional involvement revealed a pattern similar to that found with cognitive involvement. That is, parents worried the most about vocational placements, followed by access to social activities and concern over future living environments. Thirty-seven percent of parents frequently worried about vocational placements compared with 15.4% who frequently worried about future access to social activities and living environments.
When parents were asked to rate their overall level of satisfaction with their involvement in their sons' or daughters' transition programming, 77% reported that they were very satisfied or satisfied, 19.2% reported that they were unsatisfied, and 3.8% reported that they were indifferent. Twenty-three percent of parents wanted no change in their level of involvement, 30.8% desired a little more, and 46.2% desired much more involvement. No parents reported that they would like to be less involved. Figure 1 shows parent responses when asked what would be (or would have been) helpful in terms of transition planning. No parent responded that he or she did not need any help at all.
Finally, when the parents of the 26 young adults who had exited the school system were compared on various involvement variables to the parents of those 26 young adults who were still in school, the only significant difference found was in the level of behavioral involvement. Parents of young adults who had already exited the school system were more actively involved in transition programming than were parents of those who had not yet exited, t(52) =−2.79, p < .01.
One of the distinguishing aspects of the present study was our examination of the period of transition with a fairly homogeneous sample of young adults with severe mental retardation. To date, most empirical studies on transition have involved large samples of individuals with a variety of disabilities and persons with milder impairments. Here, we examined the extent that transition programming is occurring for a more challenged population.
Not surprisingly, more than half of the parents in the study reported that the young adult with severe mental retardation had an ITP. However, over a third of the overall sample reported either that they did not know whether the young adult had such a plan or that the young adult did not have a plan. This is of concern for two reasons: (a) if these young adults truly did not have a transition plan, then these school districts were out of compliance with the transition mandate of IDEA; (b) if these young adults did have a plan, but parents were not aware of it, then they may have had a reduced opportunity to be actively involved in the planning that took place for their son or daughter and been less knowledgeable of transition goals and objectives.
Parents reported that most of their young adults received instruction in daily living skills, social skills, and community integration skills. Three fourths of the sample received unpaid work experience, with approximately half receiving pay for work (though some students had both paid and unpaid work experience). This is a positive finding, particularly for young adults who are very cognitively involved. Previous research has indicated that paid work experience during school is associated with more successful vocational outcomes after exiting school (Benz et al., 1997).
Parents appeared to have pessimistic views of future work environments for these young adults with severe mental retardation. Although in the ideal world, with all funding and supports provided, these parents would like to see the young adults working in independent and supported work environments, realistically they see the young adults in more restrictive and less normative vocational placements. An overriding theme in talking with these families was the lack of options available for young adults with severe mental retardation once they leave the school system. This may be related to the discrepancy found between parents' idealistic vocational expectations for their sons and daughters and realistic vocational expectations. Supported employment programs are often hard to come by, have specific admittance criteria, or have long waiting lists. On the other hand, sheltered workshops and day activity programs typically serve a variety of individuals of different ages with different needs. In the present study, some parents of young adults remaining at home after exiting school reported that there were no suitable programs available at all. For example, parents described staff members who were not trained to support the medical needs of some or the behavioral needs of others; furthermore, lack of transportation and long driving distances were issues.
For the most part parents in our sample did not foresee the young adult moving out of the home soon after exiting the school system. Only a third of respondents reported that the young adults would live out of the home within 5 years of leaving public school. These reports are consistent with national data indicating that young people without disabilities are remaining at home for a longer period of time after graduating from high school (U.S. Department of Commerce, 1991). Data from this study are also consistent with those of Kregel et al. (1986), who found that 92% of a sample of 117 young adults with moderate or severe mental retardation lived at home within a few years of exiting high school. In the present sample, 88.5% of exited students were still living at home at the time of the interview.
Despite the fact that family life cycle literature suggests that movement out of the home is “normative,” we do not see it as a prominent indicator of successful transition. There are other factors to consider, such as the type of environment or residence offered to the young adult and the parents' willingness or desire to “launch” their family member (Blacher et al., 1999). The three families in the current study with sons or daughters who had both exited the school system and moved out of the home reported that it was “time” for the young adult to move out. According to the parents, the young person had reached the age where he or she should be more independent. Of these three young adults living out of the home, one was living in a supported apartment and two were living in small group homes. On the other hand, the majority of families in this study did not wish for the young adult to move out of the family home after exiting high school. Common reasons given were that others could not care for the young adult as well as family members could or that the young adult was a member of the family and, thus, belonged in the home.
No significant group differences were found between those young adults who had exited the school system and those who were still receiving programming in the public schools. This is not surprising because the group that was still in school was very near the point of exiting, and their instruction in, and opportunities for, transition were similar to those who had already exited. On the other hand, one might expect parents of the young adults who had already exited to perceive future outcomes differently than would parents of those who were still in school. However, there were no significant group differences on parent expectations of future vocational placements and community living environments.
Parents in this study were involved in the transition programming of their young adult children and were satisfied with their level of involvement. Over 85% of the sample were actively involved in transition planning. This figure represents quite a bit more involvement than McNair and Rusch (1991) found, as roughly only 30% of their sample experienced involvement in the transition process. The difference in results could be a function of the IDEA (1990) mandate for transition programming. The families in the McNair and Rusch study were likely involved in the transition process before it was mandatory and given so much attention; there were simply fewer requirements for this type of programming. Alternatively, it is known that families who are a part of longitudinal research studies (such as the present sample) are families very concerned about the well-being of their son or daughter with mental retardation, very involved in their schooling (Meyers & Blacher, 1987), and likely to be advocates for their children. Moreover, the parents of young adults who had exited the school system had higher levels of behavioral involvement compared to parents of young adults who had not yet exited the school system. Because these young adults had already exited the school system, parents had more opportunity to be in contact with the adult service system, observe possible vocational placements, and participate in transition planning.
The fact that only 15% of families reported that they worry about future living arrangements for the sons or daughters is, perhaps, incongruent with the philosophy of normalization. For the most part, these families do not seem to be planning for the young adult to leave the family home. They are content with the young person remaining at home when he or she has reached the chronological age where typical peers are being launched into adulthood. We have also seen this trend with parents of older adult sons or daughters with mental retardation (Heller & Factor, 1988; Seltzer & Krauss, 1994). It seems that the major transition issue confronting the parents at this stage is how the young adult is going to spend his or her day after exiting the school system. Sixty percent of the sample reported that they often or frequently thought about a vocational placement for their son or daughter. Most of these young adults have been involved in public schooling for 6 hours a day. They have often been in the same classes with the same teachers for many years. The potential for discontinuity of service provision once the young adult turns 22 is, perhaps, of great concern to parents.
As a whole, these parents were minimally concerned with community living for the young adults. They were more concerned with vocational placements and access to social activities once school ends. This may reflect (a) a tendency for parents to concentrate on the most crucial aspects of transition first, (b) a lack of desire to disrupt the residential status quo (i.e., young adult lives at home, things are fine, why make a change), or (c) a paucity of information and knowledge regarding options for community living. In the latter case, it will be important for schools and adult service agencies to address various options for community living once the young adult reaches transition age. When parents express interest in possible community living arrangements for their son or daughter, they should be encouraged to view various kinds of living environments so that they can begin to see what is available.
Finally, we note that in the current investigation, transition programming information is shared from the perspective of parents; the perspective of teachers is also very important. Preliminary data looking at teacher reports of transition programming received by this group of young adults indicated consistent responses between parents and teachers in terms of programming received (Kraemer & Blacher, 1999). It will be important to continue to study the period of transition for young adults with severe disabilities to determine how schools, families, and communities are preparing these young people to leave the school system. Future researchers may want to examine parent involvement in relation to specific postschool outcomes (e.g., work settings, residential choices) and as predictors of transition success. Finally, it would be useful to study families with young adults who have severe mental retardation and are more ethnically and culturally diverse, because such studies do not yet appear in the empirical literature.
NOTE: Preparation of this manuscript was supported by National Institute for Child Health and Human Development Grant HD21324 (Jan Blacher, principal investigator). We gratefully acknowledge the participation of the parents in this study. Special thanks to Carolyn Christensen, who took part in family interviews and helped with data entry.
Authors:Bonnie R. Kraemer, PhD, Assistant Professor, Division of Educational Specialties, Hokona Hall, R. 273, University of New Mexico, Albuquerque, NM 87131. Jan Blacher, PhD, Professor, School of Education, University of California, Riverside, CA 92521