Transition is an ongoing process of
planning, implementing, evaluating,
and balancing the details of parents’
lives with the details of their children’s
lives to achieve an integrated quality of
life for the entire family. Parents are
the consistent thread in their children’s
lives, and the responsibility for obtain-
ing and following through with adult
services for their children typically falls
on them. Although families piece
together support networks, invest per-
sonal resources, and juggle multiple
roles and responsibilities to help their
children achieve fulfilling futures,
teachers must ensure that they equip
parents with needed information and
resources. Current service-delivery
models place families in a central role
in determining services, and educators
now realize that they must furnish sup-
ports for parents so that they can par-
ticipate effectively in this complex tran-
sition process (Caldwell, 2006; Kreider,
Caspe, Kennedy, & Weiss, 2007).
Parental and family involvement in
the transition of youth with disabilities
from school to the adult world is vital.
The No Child Left Behind Act (NCLB)
of 2001 emphasized the important role
that families play in their children’s
education, and the Individuals With
Disabilities Education Improvement Act
(IDEA) of 2004 mandated parental
involvement in educational planning.
Research indicates that student and
family participation remains one of the
five national challenges facing second-
ary education and transition services
(Johnson, Stodden, Emanuel, Lueck-
ing, & Mack, 2002; see box “Challenges
Facing Secondary Education and
Transition Services”).
To provide best-practice strategies
for involving parents in the successful
transition of youth from school to
adulthood, this article reviews the tran-
sition literature and then presents find-
ings from our interviews with four
mothers of children with disabilities.
We also furnish a list of transition-
related Internet resources for youth,
families, and professionals.
Adolescent Development
and Family Stress
People typically describe adolescence
as a time of turmoil, distress, and con-
flict between the adolescent and the
family. Families of youth with dis-
abilities face additional sources of
stress concerning their children’s
social–sexual adjustment, vocational
options and career choices, guardian-
ship and advocacy issues, financial
security, and needs for recreation and
leisure. In addition to their traditional
roles and responsibilities, parents often
spend their days making telephone
calls or writing e-mails to teachers,
28 COUNCIL FOR EXCEPTIONAL CHILDREN
T
E
A
C
H
IN
G
E
xc
ep
ti
on
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l
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h
il
d
re
n
,
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41
,
N
o
.
6,
p
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.
28
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6.
C
o
p
yr
ig
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20
09
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E
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.
Mothers’ Experiences
of Transition Planning
for Their Children
With Disabilities
Elizabeth Madson Ankeny � Julia Wilkins � Jayne Spain
Although families piece together support networks, invest personal
resources, and juggle multiple roles and responsib ...
Transition is an ongoing process ofplanning, implementing, e.docx
1. Transition is an ongoing process of
planning, implementing, evaluating,
and balancing the details of parents’
lives with the details of their children’s
lives to achieve an integrated quality of
life for the entire family. Parents are
the consistent thread in their children’s
lives, and the responsibility for obtain-
ing and following through with adult
services for their children typically falls
on them. Although families piece
together support networks, invest per-
sonal resources, and juggle multiple
roles and responsibilities to help their
children achieve fulfilling futures,
teachers must ensure that they equip
parents with needed information and
resources. Current service-delivery
models place families in a central role
in determining services, and educators
now realize that they must furnish sup-
ports for parents so that they can par-
ticipate effectively in this complex tran-
sition process (Caldwell, 2006; Kreider,
Caspe, Kennedy, & Weiss, 2007).
Parental and family involvement in
the transition of youth with disabilities
from school to the adult world is vital.
The No Child Left Behind Act (NCLB)
of 2001 emphasized the important role
2. that families play in their children’s
education, and the Individuals With
Disabilities Education Improvement Act
(IDEA) of 2004 mandated parental
involvement in educational planning.
Research indicates that student and
family participation remains one of the
five national challenges facing second-
ary education and transition services
(Johnson, Stodden, Emanuel, Lueck-
ing, & Mack, 2002; see box “Challenges
Facing Secondary Education and
Transition Services”).
To provide best-practice strategies
for involving parents in the successful
transition of youth from school to
adulthood, this article reviews the tran-
sition literature and then presents find-
ings from our interviews with four
mothers of children with disabilities.
We also furnish a list of transition-
related Internet resources for youth,
families, and professionals.
Adolescent Development
and Family Stress
People typically describe adolescence
as a time of turmoil, distress, and con-
flict between the adolescent and the
family. Families of youth with dis-
abilities face additional sources of
3. stress concerning their children’s
social–sexual adjustment, vocational
options and career choices, guardian-
ship and advocacy issues, financial
security, and needs for recreation and
leisure. In addition to their traditional
roles and responsibilities, parents often
spend their days making telephone
calls or writing e-mails to teachers,
28 COUNCIL FOR EXCEPTIONAL CHILDREN
T
E
A
C
H
IN
G
E
xc
ep
ti
on
a
l
C
h
il
d
re
n
,
V
o
l.
5. With Disabilities
Elizabeth Madson Ankeny � Julia Wilkins � Jayne Spain
Although families piece together support networks, invest
personal
resources, and juggle multiple roles and responsibilities to help
their children achieve fulfilling futures, teachers must ensure
that
they equip parents with needed information and resources.
Transition
setting up and coordinating appoint-
ments with agencies, completing appli-
cations and evaluations, participating
in team meetings, and providing docu-
mentation to insurance companies to
obtain needed services that schools do
not provide (Kochhar-Bryant & Greene,
2009; see box, “Adolescent Develop-
ment and Family Stress: Suggestions
for Case Managers and Teachers”).
Team Collaboration
6. and Roles of Families
During transition, families rely on edu-
cators and other professionals to fur-
nish information about future options
for their children (Whitney-Thomas &
Hanley-Maxwell, 1996). In fact, find-
ings from the National Longitudinal
Transition Study-2 (NLTS-2; Wagner,
Newman, Cameto, Levine, & Marder,
TEACHING EXCEPTIONAL CHILDREN � JULY/AUG 2009
29
Challenges Facing Secondary
Education and Transition
Services
• Ensuring that students with
disabilities have access to the full
range of general education’s
curricular options and learning
experiences.
• Making high school graduation
decisions on the basis of mean-
ingful indicators of students’
learning and skills and clarifying
the implications of different
diploma options for students
with disabilities.
• Ensuring students access to
and full participation in post-
secondary education, employ-
ment, and independent living
7. opportunities.
• Supporting student and family
participation.
• Improving collaboration and
system linkages at all levels.
Adapted from Johnson, Stodden,
Emanuel, Luecking, & Mack, 2002.
Adolescent Development and Family Stress: Suggestions
for Case Managers and Teachers
• Involve parents in planning for their child’s future early in the
transition
process.
• Use a phased approach to adult service delivery.
• Take a leadership role in creating interagency linkages.
• Draw on the knowledge of different team members.
• Provide families with the names of individuals responsible for
implementing
and following up on various aspects of the transition plan.
• Help family members acknowledge their changing roles and
responsibilities.
• Provide ongoing communication and collaboration with
families.
• Communicate with parents using their preferred mode (e-mail,
letter, phone,
8. face-to-face).
• Focus on the positive characteristics and strengths of the
child.
2007) indicate that 81% of parents of
youth with disabilities learned about
services from their children’s schools.
The wide array of services available for
students with disabilities can involve
multiple systems, including education,
health, recreation, and vocational reha-
bilitation, all of which may have dis-
tinct eligibility criteria and complex
qualification rules.
Although professionals recognize
the importance of collaboration in
managing the complexities of transi-
tion, research suggests the existence of
a significant gap between its assigned
importance and actual practice (Blue-
Banning, Summers, Frankland, Nelson,
& Beegle, 2004). Moreover, school pro-
fessionals may actually engage in
actions that disempower families and
overtly endorse their expert power
(Turnbull & Turnbull, 2001).
To develop collaborative partner-
ships, teachers must understand cul-
turally based variations in attitudes,
beliefs, and meanings of transition.
Rueda, Monzo, Shapiro, Gomez, and
9. Blacher (2005) identified several areas
in which the orientation of Latina
mothers and the service delivery sys-
tem were strikingly at odds. In particu-
lar, the system viewed youth as auton-
omous individuals, although mothers
viewed their children as embedded in
the family. Also, the mothers believed
that educators devalued and ignored
their personal knowledge of their chil-
dren, whereas educators promoted the
belief that professional expertise was
correct. For the mothers in this study,
the absence of shared perspective led
to confusion, misunderstanding, and
isolation.
Another study of culturally and lin-
guistically diverse (CLD) families indi-
cated that parents placed much more
emphasis on transition-related tasks
than school professionals gave them
credit for. This situation occurred
because families chose to prepare their
children for adulthood through family
and community experiences rather
than through school-based approaches
(Geenan, Powers, & Lopez-Vasquez,
2001). Similarly, LandAdam, Zhang,
and Montoya (2007) indicated that
although CLD parents often did not
understand the jargon of special edu-
cation (for example, more than one
third of parents in that study were not
familiar with the phrase transition
10. planning), they did possess a great
deal of knowledge about their children
that was useful for the transition plan-
ning process.
According to the NLTS-2, transition-
ing youth with disabilities most often
rely on their family members and
friends for support when making
important decisions or facing problems
(Wagner et al., 2007). Because parents
are likely to know their child best,
professionals should respect parents’
knowledge and use parents as
resources (Everson & Zhang, 2000).
They should also make sure that family
members understand the formalities of
the transition process. Research indi-
cates that families experience higher
levels of satisfaction with services if
they have even limited involvement in
aspects of service delivery (Neely-
Barnes, Graff, Marcenko, & Weber,
2008; see box, “Team Collaboration
and Roles of Families: Suggestions for
Case Managers and Teachers”).
Employment for Transitioning
Youth
A crucial component of transition plan-
ning for students with disabilities is
early exposure to employment activi-
ties. Numerous studies have indicated
a strong positive association between
11. paid work experience during high
school and postschool job success for
youth with disabilities (Benz, Yovanoff,
& Doren, 1997; Luecking & Fabian,
2000; Wittenburg & Maag, 2002).
Everyone must view job development
as a joint responsibility that educators,
vocational rehabilitation counselors,
students, and families share rather
than as the sole responsibility of any
one person (Everson & Moon, 1987;
Ferguson, Ferguson, & Jones, 1988).
Families are likely to have a strong
influence on the career development
process for their children (Penick &
Jepsen, 1992; Whiston & Keller, 2004).
Morningstar, Turnbull, and Turnbull
(1996) reported that students with dis-
abilities more often secured employ-
ment through parent contacts than
through professional agency sources.
Transition teams should therefore con-
sider family networks when planning
for students’ future employment (see
box, “Employment for Transitioning
Youth: Suggestions for Case Managers
and Teachers”).
Postschool Roles of Families
The process of transition begins in
early childhood when families encour-
age their children to develop independ-
ence, decision-making skills, and social
skills (Turnbull & Turnbull, 1990).
12. During adolescence, the roles of fami-
lies may include providing material
and emotional support, as well as act-
ing as advocates for appropriate servic-
es. Families often become the backup
system for limited services, with their
support continuing indefinitely over
their child’s lifetime (Hanley-Maxwell,
Whitney-Thomas, & Pogoloff, 1995).
Several studies have indicated that the
family remained the only consistent
source of support for individuals with
disabilities after they graduated from
30 COUNCIL FOR EXCEPTIONAL CHILDREN
Team Collaboration
and Roles of Families:
Suggestions for Case
Managers and Teachers
• Recognize and include all parents
and family structures (gay/
lesbian, adoptive, foster, grand-
parents, blended) as equal
partners in decision making.
• Encourage the participation of
siblings and extended family
members.
• Include family resources and
community members in planning.
• Recognize that parents know
their child best.
13. • Respect the family’s goals for the
child.
• Ask families to share areas in
which they would like more
support for their child.
• Be understanding of the levels of
responsibility and involvement
that parents are willing or able
to assume.
high school (Hanley-Maxwell, Pogoloff,
& Whitney-Thomas, 1998; Morningstar
et al., 1996).
In reality, no one agency provides
all the necessary services for an adult
with a disability. The period from 1992
to 2004 saw an increase in the number
of states that offered young adults with
developmental disabilities the opportu-
nity to choose their service providers.
As this market-based system shifted
key responsibilities from state educa-
tion departments to families, the sys-
tem became more complicated for fam-
ilies. With their increased role in seek-
ing out programs, families must gain
the necessary skills to find appropriate
programs for their children (Breihan,
2007; see box “Postschool Roles of
Families: Suggestions for Case Mana-
14. gers and Teachers”).
Interviews With Mothers
Findings from the NLTS-2 indicated
that levels of parental involvement in
the individualized education program
(IEP) process related to characteristics
of the families themselves. Compared
with families with limited parental
involvement, the following situations
correlated with high levels of parental
involvement:
• Retaining more family resources,
such as higher incomes or higher
levels of parental educational attain-
ment.
• Having two parents residing in the
household.
• Securing external supports.
• Belonging to support groups for
families of children with disabilities
(Newman, 2004).
To provide the perspectives of
informed parents, we interviewed four
mothers who fit the aforementioned
profile of highly involved parents.
Myers (2000) proposes that where in-
depth descriptions are essential to the
goals of the study, “small qualitative
15. studies can gain a more personal
understanding of the phenomenon and
the results can potentially contribute
valuable knowledge to the community”
(p. 9).
Method
We recruited four mothers who had
conducted a panel presentation at a
local professional conference about
their experiences as mothers of children
with disabilities (see Table 1). We con-
tacted all mothers by telephone or e-
mail, and they agreed to be interviewed
about their transition experiences. The
first two authors each interviewed two
mothers in the mothers’ homes or
places of work. We conducted the inter-
view by using a semistructured inter-
view protocol, and each interview last-
ed between 1 and 1.5 hours. We audio-
taped all interviews and subsequently
transcribed them verbatim.
We implemented inductive qualita-
tive data-analysis procedures (Coffey &
Atkinson, 1996; Marshall & Rossman,
1999; Miles & Huberman, 1994) and
completed initial coding individually.
First, we read each interview transcript
in detail to obtain a general sense of
the whole interview. We then reread
each interview transcript to begin
16. TEACHING EXCEPTIONAL CHILDREN � JULY/AUG 2009
31
Employment for Transitioning
Youth: Suggestions for Case
Managers and Teachers
• Explain career options to the
student and family.
• Encourage parents’ input
with regard to identifying and
obtaining employment.
• Inform parents about the roles
of vocational rehabilitation
counselors.
• Create intentional career explo-
ration and career planning, and
provide specific information
about job options and opportuni-
ties.
• Consider quality-of-life issues,
such as establishing an identity,
economic independence, and
access to peer groups when
exploring job options.
• Provide a range of services,
including skills assessment,
career counseling, and job
seeking.
• Encourage interagency collabora-
17. tion to develop a cohesive set of
objectives across programs.
Postschool Roles of Families:
Suggestions for Case
Managers and Teachers
• Point families to resources that
they can use for support (e.g.,
organizations, professionals,
community members).
• Encourage parents to join advo-
cacy groups and network with
other families.
• Contact community resources on
behalf of parents, if necessary.
• Help families make contact with
student disability services at
postsecondary institutions.
• Provide information on support-
ed employment programs that
offer integrated sets of services.
• Help parents understand the
Social Security work incentive
provisions and the redetermina-
tion process for youth at age 18.
• Provide information for parents
on how to access a variety of
adult service providers (e.g.,
Department of Health and
18. Human Services Administration
on Developmental Disabilities,
Departments of Education and
Labor, Centers for Medicaid and
Medicare Services, Social
Security Administration).
Table 1. Interview Participants With Child Information
Mother Child Age of Child Disability
Pam Adam 18 Mild to moderate mental retardation
Val Trevor 25 Mild to moderate mental retardation
Joan Kate 23 Moderate mental retardation
Sharon Lisa 22 Moderate to severe mental retardation
formal coding in a systematic way. We
used sentences and phrases as the
units of analysis (Patton, 2002) and
wrote central ideas in the margins. In
the next stage of analysis, we reviewed
all codes and wrote comments on pos-
sible relationships among them (Pat-
ton). After this initial coding of all
interview transcripts, we compared our
codes and revised them as necessary to
reach interrater agreement. Together,
we then made cross-case comparisons.
We compared participants’ responses
to the same question and identified
similarities, differences, patterns, and
themes across the data. To reduce the
effects of researcher bias, the third
author read and commented on our
19. interpretations after the initial attain-
ment of themes (Marques & McCall,
2005). Through this process, the fol-
lowing three themes emerged:
• Goals and barriers to independence
in adulthood.
• Transition as an ongoing process.
• Importance of communication and
support from teachers.
Goals and Barriers to
Independence in Adulthood
All mothers shared similar goals for
their children: They wanted them to be
independent, successful, and happy.
Whereas mothers reflected positively
upon their children’s experiences of
inclusion, mothers of daughters
expressed concern about the influence
of typical peers. In particular, mothers
struggled to accept the desires of their
teenage daughters to date and marry
and grappled with internal conflicts
over wanting their daughters to live
like other young adults while also rec-
ognizing the need to “protect” them
from such lives. In another example,
Val described how her son was “like
any other child” and stated, “Other
kids grow up, leave home, get married;
well, obviously not get married [italics
added], but live their own life. And
20. that’s pretty close to what he’s doing
now.” To understand their children’s
independence, these mothers had to
reinterpret their expectations of what it
meant to be living “like any other
child.” One mother referred to her
son’s living in a group home with 24-
hour support as independence inas-
much as it involved his moving away
from home, and other families created
experiences that simulated those of
typical peers, such as celebrating grad-
uation from transition programs and
referring to such programs as “college.”
Joan discussed the role that she
played in removing her daughter from
an unsuccessful job experience that
she described as “total chaos.” Joan
not only had to advocate for her
daughter in removing her from the
work setting but also had to continue
coordinating such services as trans-
portation and home support around
Kate’s new schedule. Even when Kate
was working, her mother was primari-
ly responsible for managing these day-
to-day activities. Such examples high-
lighted the ongoing support that par-
ents still had to provide for their chil-
dren when they were in the workplace.
Although mothers described the role
that other people, such as group home
staff, played in helping their children
21. achieve independence, they clarified
that “most of the important decisions
still come through us.” Sharon
explained, “medically, financially, we
do all that stuff for her . . . people
don’t see that additional stress of caring
for a child that’s an adult but still has
significant needs.” Pam explained that
the preparation that she and her hus-
band furnished for Adam in his transi-
tion to adulthood involved their volun-
teering together at the public library
and a local animal shelter, as well as
allowing him to scan groceries and
handle money when shopping. Pam
commented, “We are trying to prepare
him for real-world things, but it often
takes so long for him to do something
that I just rush in and do it myself
because I’m not patient.” Both she and
her husband worked in demanding full-
time jobs, and the need to maintain
regular communication with Adam’s
teacher and adult service providers—in
addition to attending meetings, explor-
ing employment and housing options,
setting up a special needs trust, and
wading through complicated Social
Security and medical assistance appli-
cations—were additional responsibili-
ties that they had to juggle.
The stories that mothers shared
illustrated the reality of independence
22. for these young adults with disabilities.
Parents needed to perform certain tasks
on their children’s behalf, and mothers
understood that they would need to
provide lifelong support. Even though
these young adults faced limitations in
what they could achieve independent-
ly, their mothers emphasized the
importance of giving them opportuni-
ties to explore themselves and their
options. In the words of one mother:
“You’ve got to make sure you don’t
close the door on someone right away
because they make a mistake.”
Transition as an Ongoing Process
The mothers described the transition
process as a journey that began the day
that their child was born. Joan reflect-
ed, “I’ve been very appreciative and
blessed that in our journey, we’re not
alone. Not that we were planning on
going on the journey, but it’s not a bad
journey.” Sharon reiterated the impor-
tance of the support of others on this
journey: “It’s hard, so it’s nice to have
people around you to support you. Not
to coddle you, just to support you.”
The mothers viewed the transition
process as an ongoing quest for options
and opportunities for their children.
They spoke of personal research as a
means to better understand their child’s
23. particular disability, as well as a means
of coping and making sense of their
unplanned roles as mothers of children
with disabilities. Joan offered that her
method was to “read and read and
study and study and study.” The moth-
ers also appreciated the knowledge and
information that professionals shared.
Val explained, “They knew all the
places and people to get into contact
with, opportunities, choices we had.”
32 COUNCIL FOR EXCEPTIONAL CHILDREN
The mothers viewed the transition process as an ongoing
quest for options and opportunities for their children.
Each of the mothers spoke of the
importance of initiating the transition
process early, as an end-in-mind
process. Joan described this end-in-
mind process as looking
. . . 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.
24. Sharon rationalized the urgency of
starting the process early by contrast-
ing the transition process for her chil-
dren without disabilities with the tran-
sition process for her daughter who
had a disability. She explained, “With
a child with a disability, you’re con-
stantly thinking of what’s going to hap-
pen to that child when you’re not
around . . . you start the process earli-
er because there are so many more
unknowns.”
Val echoed the importance of initiat-
ing the process early and recommend-
ed that parents make a conscious deci-
sion to acknowledge that their child
will someday leave home. She stated,
I would tell them [other parents]
to start preparing now. That’s
one of the biggest things; parents
like to put it off so they’re not
facing their child leaving home,
and it’s a mistake because it’s a
lot harder to do later.
Pam focused on the difficult experi-
ence of going through the legal aspects
of adulthood. She explained
The guardianship was the hard-
est. You spend all these years
celebrating all his competencies
in these minor areas, like count-
ing money, he could find the
25. butter in the grocery store with-
out being told where it is, or
something like that, and then
you basically go to a judge and
have him judge your child to be
incompetent. And it has to be
done so that he’s not able to sign
legal contracts and things like
that and be taken advantage of
in a big world. But it is still a
really tough day.
All mothers discussed the impor-
tance of preparing their children with
realistic skills that help make them
ready for adulthood. They spoke of the
need to include more opportunities for
their children to develop skills in real-
life environments, including learning
such streetwise skills as how to behave
with strangers. Joan suggested,
Just getting out into the real
world, even if it’s just an hour-a-
day job situation and getting a
change and a little less under the
wing of the intensive support
that we sometimes provide stu-
dents; they’re not going to get
that [in the future]. It’s not like
you are going to have your own
little para follow you around at
work.
Although some consider the transi-
tion process to be completed when an
26. individual has secured a job and a sat-
isfactory housing situation, the moth-
ers in this study challenged that
notion. Joan considered her daughter’s
present situation and the future:
I think her housing situation is a
really good fit for her right now.
It’s still hard for me to picture
any less restrictive setting for her
right now . . . . Just because it’s
working right now doesn’t mean
it has to stay that way.
Joan shared similar thoughts about
her daughter’s employment situation:
I would like to see her moved
into a different type of work
rather than just cleaning . . . .
It’s very easy to just sit back and
relax . . . . She’s still growing
and learning . . . . If you look at
your own experiences or your
other kids, they’re still taking in
those life experiences . . . and
we are never done; I know that.
And I want to give her the same
window of opportunity that we
would give anybody.
Communication and Support
From Teachers
The mothers valued consistent and
respectful communication from teach-
27. ers. Pam stated,
We e-mail the teacher at least
once a week, if not five times
a day, depending on what’s
going on. She knows that Adam
doesn’t report accurately so if
something odd happens, she will
e-mail that this is what hap-
pened and I have no idea what
Adam will tell you, but this is
what really happened.
This type of information from the
teacher assisted Pam when she com-
municated with Adam at home.
Mothers encouraged teachers to hon-
estly and bravely address the tough
issues with parents. Sharon comment-
ed that when teachers engaged in
respectful dialogue with her, she was
more prone to accept what she consid-
ered to be questionable management of
her daughter. She shared, “I thought
how they treated her shutting down
wasn’t appropriate, but I never felt like
I was looked down on; they were
respectful of me.”
All mothers expressed gratitude that
teachers provided information about
community resources and future pro-
gramming opportunities. Pam stated,
It’s been hard to go through all
28. these different steps, but the
social service people and the
school people have continually
reinforced, “Have I done these
things yet?” “Are you remember-
ing that this happens when he
turns this age?” Things like that.
So they are constantly prompting
and educating us as we go
through these different phases of
his life.
She also requested that teachers
share the information, and share
repeatedly because “people don’t retain
what they don’t expect to use.” Joan
expressed the disappointment that
some parents experienced when the
lines of communication were weak:
“You hear repeatedly from parents, ‘I
didn’t hear anything about that from
the school.’ You just get a little sad that
there’s a breakdown there someplace.”
One of the mothers explained
There are flyers all the time at
school when you are in first
grade, things just come home all
the time. In middle school and
high school, those flyers stop
and the kids are supposed to
know what’s going on and you
get no information coming home
TEACHING EXCEPTIONAL CHILDREN � JULY/AUG 2009
33
29. 34 COUNCIL FOR EXCEPTIONAL CHILDREN
Table 2. Transition Resources
Name of Resource Description
Annie E. Casey Foundation
(www.aecf.org)
This organization serves children in foster care and children
who are at risk for poor
educational, economic, social, and health outcomes. It provides
printed resources on a
wide variety of topics, including a page for Youth
Transition/Youth Development.
Family Village: A Global Village of
Disability-Related Resources
(www.familyvillage.wisc.edu)
This site furnishes information, resources, and opportunities
available on the Internet
for individuals with disabilities, their families, and service
providers.
A wide variety of links to Web resources pertain to transition.
Healthy & Ready to Work National
Center (www.hrtw.org)
This site gives connections to nationwide health and transition
expertise and
focuses on understanding systems, access to quality health care,
and increasing the
30. involvement of youth. It also includes resources needed to make
informed choices.
National Center on Secondary
Education and Transition
(www.ncset.org)
This site furnishes resources, offers technical assistance, and
disseminates
information related to secondary education and transition for
youth with disabilities.
Many resources are available in English and Spanish.
National Dissemination Center
for Children with Disabilities
(NICHCY; www.nichcy.org)
This site provides a wealth of resources from a variety of
nationally-recognized
sources. It includes Web pages with links to Transitions 101,
resources for parents,
resources for students, resources for professionals, and
transition and specific
disabilities.
PACER Center (www.pacer.org) This site includes a
comprehensive catalogue of publications. The mission of the
PACER Center is to enhance the quality of life of children and
young adults with
disabilities and their families and is based on the concept of
parents helping parents.
Technical Assistance on Transition
and the Rehabilitation Act (TATRA)
(www.pacer.org/tatra/index.asp)
31. The TATRA project at the PACER Center and other parent
information and training
projects help families learn how they can assist young people
with disabilities
prepare for independent adult life in the community.
Parenting Postsecondary Students
with Disabilities
(www.heath.gwu.edu/node/209)
This site, from the nation's clearinghouse on postsecondary
education for
individuals with disabilities, discusses how to become a mentor
and advocate
to promote the needs of young adults.
Directory of Independent Living
Centers Nationwide
(www.virtualcil.net/cils)
This site provides a nationwide map with links to centers for
independent living
that furnish several core services: advocacy, independent living
skills training,
information and referral, and peer counseling.
The Arc of the United States
(www.thearc.org)
The Arc is the world's largest community-based organization for
people with
intellectual and developmental disabilities. The site includes an
array of information
with links to state and local chapters.
National Secondary Transition
32. Technical Assistance Center
(NTTAC; www.nsttac.org)
NTTAC provides support and information to states, local
educational agencies,
practitioners, researchers, parents, and students regarding
effective transition
education that can enhance postschool outcomes.
National Youth Leadership Network
(NYLN; http://nyln.org)
NYLN furnishes a national voice for young leaders with
disabilities. The Web site
includes a variety of resources, including a list of young leaders
who speak on a
variety of topics.
about dances, football games;
you get nothing. So it is lovely
when the teacher e-mails us or
forwards something and says,
“oh did you know this is going
on?” It is extra work and extra
time, but we really appreciate it.
Pam emphasized the importance of
getting involved in community organi-
zations: “I know who to call and I
know what my options are, but if I had
not been in these committees or gone
to the seminars, I would not have a
clue.” Joan also issued a cautionary
reminder; parents need guidance about
33. how to ask the right questions. She
commented,
Too often it seems like if you
don’t ask the right question, you
won’t get the right answer. But if
you don’t know the right ques-
tion, how are you going to
know? I think that is the dilem-
ma that parents have.
According to Lustig (2002), the
degree to which family members pos-
sess strategies for seeking help can
affect their caregiving experience.
Given this situation, it is worth noting
Pam’s recommendation for parents:
“Go to the school meetings and keep
questioning people and stay involved.
It all comes to you when you need it if
you have your hand in it.”
The mothers conveyed that they felt
supported by teachers who shared sim-
ilar or enhanced visions of their chil-
dren’s abilities and future outcomes.
Sharon described her daughter’s transi-
tion-process experience in this way:
“[It was] more smooth than I ever
expected due to the teachers and the
support I felt from them.” Referring to
Lisa’s case manager, she said, “She
had the same vision I do that to the
best of Lisa’s abilities, we are going to
pursue areas that she can do . . . and
allow her to be herself.” Pam shared a
34. similar appreciation and delight for the
teacher’s belief in her son’s abilities:
She is very aware of his skills
and she’s watching to pick up
and take the ball and go run
with it with him and I think she
will actually get him to do more
things with him than I would
think possible.
Final Thoughts
The case manager plays a crucial role
in communicating with parents and in
fostering collaborative transition plan-
ning. Case managers should acknowl-
edge the family stress that revolves
around the student’s ongoing needs
and should give parents connections to
community supports and resources
(see Table 2). To nurture parents’
involvement in the transition-planning
process, case managers must maintain
honest and respectful communication
with parents while respecting the fami-
ly’s vision for their child’s future.
Furthermore, case managers must view
all family members as knowledgeable
and valued participants in planning.
The case manager should look beyond
the student’s current status and pro-
vide opportunities for him or her to
learn needed skills in environments
that are as real-life and age-appropriate
as possible, allowing each child the
35. opportunity to grow into an independ-
ent, successful, and happy adult.
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Elizabeth Madson Ankeny (CEC MN Feder-
ation), Associate Professor of Education,
Augsburg College, Minneapolis, Minnesota.
Julia Wilkins (CEC MN Federation), Assis-
tant Professor of Special Education, St. Cloud
State University, Minnesota. Jayne Spain
(CEC MN Federation), Transition Specialist,
Minnesota Department of Education, Rose-
ville, Minnesota.
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College, Campus Box 312, 2211 Riverside
Ave., Minneapolis, MN 55454 (e-mail:
[email protected]).
TEACHING Exceptional Children, Vol. 41,
No. 6, pp. 28–36
Copyright 2009 CEC.
36 COUNCIL FOR EXCEPTIONAL CHILDREN
Transition is an ongoing process of
planning, implementing, evaluating,
and balancing the details of parents’
lives with the details of their children’s
lives to achieve an integrated quality of
life for the entire family. Parents are
the consistent thread in their children’s
42. lives, and the responsibility for obtain-
ing and following through with adult
services for their children typically falls
on them. Although families piece
together support networks, invest per-
sonal resources, and juggle multiple
roles and responsibilities to help their
children achieve fulfilling futures,
teachers must ensure that they equip
parents with needed information and
resources. Current service-delivery
models place families in a central role
in determining services, and educators
now realize that they must furnish sup-
ports for parents so that they can par-
ticipate effectively in this complex tran-
sition process (Caldwell, 2006; Kreider,
Caspe, Kennedy, & Weiss, 2007).
Parental and family involvement in
the transition of youth with disabilities
from school to the adult world is vital.
The No Child Left Behind Act (NCLB)
of 2001 emphasized the important role
that families play in their children’s
education, and the Individuals With
Disabilities Education Improvement Act
(IDEA) of 2004 mandated parental
involvement in educational planning.
Research indicates that student and
family participation remains one of the
five national challenges facing second-
ary education and transition services
(Johnson, Stodden, Emanuel, Lueck-
ing, & Mack, 2002; see box “Challenges
43. Facing Secondary Education and
Transition Services”).
To provide best-practice strategies
for involving parents in the successful
transition of youth from school to
adulthood, this article reviews the tran-
sition literature and then presents find-
ings from our interviews with four
mothers of children with disabilities.
We also furnish a list of transition-
related Internet resources for youth,
families, and professionals.
Adolescent Development
and Family Stress
People typically describe adolescence
as a time of turmoil, distress, and con-
flict between the adolescent and the
family. Families of youth with dis-
abilities face additional sources of
stress concerning their children’s
social–sexual adjustment, vocational
options and career choices, guardian-
ship and advocacy issues, financial
security, and needs for recreation and
leisure. In addition to their traditional
roles and responsibilities, parents often
spend their days making telephone
calls or writing e-mails to teachers,
28 COUNCIL FOR EXCEPTIONAL CHILDREN
45. .
28
-3
6.
C
o
p
yr
ig
h
t
20
09
C
E
C
.
Mothers’ Experiences
of Transition Planning
for Their Children
With Disabilities
Elizabeth Madson Ankeny � Julia Wilkins � Jayne Spain
Although families piece together support networks, invest
personal
resources, and juggle multiple roles and responsibilities to help
their children achieve fulfilling futures, teachers must ensure
that
they equip parents with needed information and resources.
46. Transition
setting up and coordinating appoint-
ments with agencies, completing appli-
cations and evaluations, participating
in team meetings, and providing docu-
mentation to insurance companies to
obtain needed services that schools do
not provide (Kochhar-Bryant & Greene,
2009; see box, “Adolescent Develop-
ment and Family Stress: Suggestions
for Case Managers and Teachers”).
Team Collaboration
and Roles of Families
During transition, families rely on edu-
cators and other professionals to fur-
nish information about future options
for their children (Whitney-Thomas &
Hanley-Maxwell, 1996). In fact, find-
ings from the National Longitudinal
Transition Study-2 (NLTS-2; Wagner,
Newman, Cameto, Levine, & Marder,
47. TEACHING EXCEPTIONAL CHILDREN � JULY/AUG 2009
29
Challenges Facing Secondary
Education and Transition
Services
• Ensuring that students with
disabilities have access to the full
range of general education’s
curricular options and learning
experiences.
• Making high school graduation
decisions on the basis of mean-
ingful indicators of students’
learning and skills and clarifying
the implications of different
diploma options for students
with disabilities.
• Ensuring students access to
and full participation in post-
secondary education, employ-
ment, and independent living
opportunities.
• Supporting student and family
participation.
• Improving collaboration and
system linkages at all levels.
Adapted from Johnson, Stodden,
Emanuel, Luecking, & Mack, 2002.
48. Adolescent Development and Family Stress: Suggestions
for Case Managers and Teachers
• Involve parents in planning for their child’s future early in the
transition
process.
• Use a phased approach to adult service delivery.
• Take a leadership role in creating interagency linkages.
• Draw on the knowledge of different team members.
• Provide families with the names of individuals responsible for
implementing
and following up on various aspects of the transition plan.
• Help family members acknowledge their changing roles and
responsibilities.
• Provide ongoing communication and collaboration with
families.
• Communicate with parents using their preferred mode (e-mail,
letter, phone,
face-to-face).
• Focus on the positive characteristics and strengths of the
child.
2007) indicate that 81% of parents of
youth with disabilities learned about
services from their children’s schools.
The wide array of services available for
49. students with disabilities can involve
multiple systems, including education,
health, recreation, and vocational reha-
bilitation, all of which may have dis-
tinct eligibility criteria and complex
qualification rules.
Although professionals recognize
the importance of collaboration in
managing the complexities of transi-
tion, research suggests the existence of
a significant gap between its assigned
importance and actual practice (Blue-
Banning, Summers, Frankland, Nelson,
& Beegle, 2004). Moreover, school pro-
fessionals may actually engage in
actions that disempower families and
overtly endorse their expert power
(Turnbull & Turnbull, 2001).
To develop collaborative partner-
ships, teachers must understand cul-
turally based variations in attitudes,
beliefs, and meanings of transition.
Rueda, Monzo, Shapiro, Gomez, and
Blacher (2005) identified several areas
in which the orientation of Latina
mothers and the service delivery sys-
tem were strikingly at odds. In particu-
lar, the system viewed youth as auton-
omous individuals, although mothers
viewed their children as embedded in
the family. Also, the mothers believed
that educators devalued and ignored
their personal knowledge of their chil-
50. dren, whereas educators promoted the
belief that professional expertise was
correct. For the mothers in this study,
the absence of shared perspective led
to confusion, misunderstanding, and
isolation.
Another study of culturally and lin-
guistically diverse (CLD) families indi-
cated that parents placed much more
emphasis on transition-related tasks
than school professionals gave them
credit for. This situation occurred
because families chose to prepare their
children for adulthood through family
and community experiences rather
than through school-based approaches
(Geenan, Powers, & Lopez-Vasquez,
2001). Similarly, LandAdam, Zhang,
and Montoya (2007) indicated that
although CLD parents often did not
understand the jargon of special edu-
cation (for example, more than one
third of parents in that study were not
familiar with the phrase transition
planning), they did possess a great
deal of knowledge about their children
that was useful for the transition plan-
ning process.
According to the NLTS-2, transition-
ing youth with disabilities most often
rely on their family members and
friends for support when making
important decisions or facing problems
(Wagner et al., 2007). Because parents
51. are likely to know their child best,
professionals should respect parents’
knowledge and use parents as
resources (Everson & Zhang, 2000).
They should also make sure that family
members understand the formalities of
the transition process. Research indi-
cates that families experience higher
levels of satisfaction with services if
they have even limited involvement in
aspects of service delivery (Neely-
Barnes, Graff, Marcenko, & Weber,
2008; see box, “Team Collaboration
and Roles of Families: Suggestions for
Case Managers and Teachers”).
Employment for Transitioning
Youth
A crucial component of transition plan-
ning for students with disabilities is
early exposure to employment activi-
ties. Numerous studies have indicated
a strong positive association between
paid work experience during high
school and postschool job success for
youth with disabilities (Benz, Yovanoff,
& Doren, 1997; Luecking & Fabian,
2000; Wittenburg & Maag, 2002).
Everyone must view job development
as a joint responsibility that educators,
vocational rehabilitation counselors,
students, and families share rather
than as the sole responsibility of any
one person (Everson & Moon, 1987;
52. Ferguson, Ferguson, & Jones, 1988).
Families are likely to have a strong
influence on the career development
process for their children (Penick &
Jepsen, 1992; Whiston & Keller, 2004).
Morningstar, Turnbull, and Turnbull
(1996) reported that students with dis-
abilities more often secured employ-
ment through parent contacts than
through professional agency sources.
Transition teams should therefore con-
sider family networks when planning
for students’ future employment (see
box, “Employment for Transitioning
Youth: Suggestions for Case Managers
and Teachers”).
Postschool Roles of Families
The process of transition begins in
early childhood when families encour-
age their children to develop independ-
ence, decision-making skills, and social
skills (Turnbull & Turnbull, 1990).
During adolescence, the roles of fami-
lies may include providing material
and emotional support, as well as act-
ing as advocates for appropriate servic-
es. Families often become the backup
system for limited services, with their
support continuing indefinitely over
their child’s lifetime (Hanley-Maxwell,
Whitney-Thomas, & Pogoloff, 1995).
Several studies have indicated that the
family remained the only consistent
53. source of support for individuals with
disabilities after they graduated from
30 COUNCIL FOR EXCEPTIONAL CHILDREN
Team Collaboration
and Roles of Families:
Suggestions for Case
Managers and Teachers
• Recognize and include all parents
and family structures (gay/
lesbian, adoptive, foster, grand-
parents, blended) as equal
partners in decision making.
• Encourage the participation of
siblings and extended family
members.
• Include family resources and
community members in planning.
• Recognize that parents know
their child best.
• Respect the family’s goals for the
child.
• Ask families to share areas in
which they would like more
support for their child.
• Be understanding of the levels of
responsibility and involvement
that parents are willing or able
54. to assume.
high school (Hanley-Maxwell, Pogoloff,
& Whitney-Thomas, 1998; Morningstar
et al., 1996).
In reality, no one agency provides
all the necessary services for an adult
with a disability. The period from 1992
to 2004 saw an increase in the number
of states that offered young adults with
developmental disabilities the opportu-
nity to choose their service providers.
As this market-based system shifted
key responsibilities from state educa-
tion departments to families, the sys-
tem became more complicated for fam-
ilies. With their increased role in seek-
ing out programs, families must gain
the necessary skills to find appropriate
programs for their children (Breihan,
2007; see box “Postschool Roles of
Families: Suggestions for Case Mana-
gers and Teachers”).
Interviews With Mothers
Findings from the NLTS-2 indicated
that levels of parental involvement in
the individualized education program
(IEP) process related to characteristics
of the families themselves. Compared
with families with limited parental
55. involvement, the following situations
correlated with high levels of parental
involvement:
• Retaining more family resources,
such as higher incomes or higher
levels of parental educational attain-
ment.
• Having two parents residing in the
household.
• Securing external supports.
• Belonging to support groups for
families of children with disabilities
(Newman, 2004).
To provide the perspectives of
informed parents, we interviewed four
mothers who fit the aforementioned
profile of highly involved parents.
Myers (2000) proposes that where in-
depth descriptions are essential to the
goals of the study, “small qualitative
studies can gain a more personal
understanding of the phenomenon and
the results can potentially contribute
valuable knowledge to the community”
(p. 9).
Method
We recruited four mothers who had
conducted a panel presentation at a
local professional conference about
56. their experiences as mothers of children
with disabilities (see Table 1). We con-
tacted all mothers by telephone or e-
mail, and they agreed to be interviewed
about their transition experiences. The
first two authors each interviewed two
mothers in the mothers’ homes or
places of work. We conducted the inter-
view by using a semistructured inter-
view protocol, and each interview last-
ed between 1 and 1.5 hours. We audio-
taped all interviews and subsequently
transcribed them verbatim.
We implemented inductive qualita-
tive data-analysis procedures (Coffey &
Atkinson, 1996; Marshall & Rossman,
1999; Miles & Huberman, 1994) and
completed initial coding individually.
First, we read each interview transcript
in detail to obtain a general sense of
the whole interview. We then reread
each interview transcript to begin
TEACHING EXCEPTIONAL CHILDREN � JULY/AUG 2009
31
Employment for Transitioning
Youth: Suggestions for Case
Managers and Teachers
• Explain career options to the
student and family.
• Encourage parents’ input
57. with regard to identifying and
obtaining employment.
• Inform parents about the roles
of vocational rehabilitation
counselors.
• Create intentional career explo-
ration and career planning, and
provide specific information
about job options and opportuni-
ties.
• Consider quality-of-life issues,
such as establishing an identity,
economic independence, and
access to peer groups when
exploring job options.
• Provide a range of services,
including skills assessment,
career counseling, and job
seeking.
• Encourage interagency collabora-
tion to develop a cohesive set of
objectives across programs.
Postschool Roles of Families:
Suggestions for Case
Managers and Teachers
• Point families to resources that
they can use for support (e.g.,
organizations, professionals,
community members).
58. • Encourage parents to join advo-
cacy groups and network with
other families.
• Contact community resources on
behalf of parents, if necessary.
• Help families make contact with
student disability services at
postsecondary institutions.
• Provide information on support-
ed employment programs that
offer integrated sets of services.
• Help parents understand the
Social Security work incentive
provisions and the redetermina-
tion process for youth at age 18.
• Provide information for parents
on how to access a variety of
adult service providers (e.g.,
Department of Health and
Human Services Administration
on Developmental Disabilities,
Departments of Education and
Labor, Centers for Medicaid and
Medicare Services, Social
Security Administration).
Table 1. Interview Participants With Child Information
Mother Child Age of Child Disability
59. Pam Adam 18 Mild to moderate mental retardation
Val Trevor 25 Mild to moderate mental retardation
Joan Kate 23 Moderate mental retardation
Sharon Lisa 22 Moderate to severe mental retardation
formal coding in a systematic way. We
used sentences and phrases as the
units of analysis (Patton, 2002) and
wrote central ideas in the margins. In
the next stage of analysis, we reviewed
all codes and wrote comments on pos-
sible relationships among them (Pat-
ton). After this initial coding of all
interview transcripts, we compared our
codes and revised them as necessary to
reach interrater agreement. Together,
we then made cross-case comparisons.
We compared participants’ responses
to the same question and identified
similarities, differences, patterns, and
themes across the data. To reduce the
effects of researcher bias, the third
author read and commented on our
interpretations after the initial attain-
ment of themes (Marques & McCall,
2005). Through this process, the fol-
lowing three themes emerged:
• Goals and barriers to independence
in adulthood.
• Transition as an ongoing process.
• Importance of communication and
60. support from teachers.
Goals and Barriers to
Independence in Adulthood
All mothers shared similar goals for
their children: They wanted them to be
independent, successful, and happy.
Whereas mothers reflected positively
upon their children’s experiences of
inclusion, mothers of daughters
expressed concern about the influence
of typical peers. In particular, mothers
struggled to accept the desires of their
teenage daughters to date and marry
and grappled with internal conflicts
over wanting their daughters to live
like other young adults while also rec-
ognizing the need to “protect” them
from such lives. In another example,
Val described how her son was “like
any other child” and stated, “Other
kids grow up, leave home, get married;
well, obviously not get married [italics
added], but live their own life. And
that’s pretty close to what he’s doing
now.” To understand their children’s
independence, these mothers had to
reinterpret their expectations of what it
meant to be living “like any other
child.” One mother referred to her
son’s living in a group home with 24-
hour support as independence inas-
much as it involved his moving away
from home, and other families created
61. experiences that simulated those of
typical peers, such as celebrating grad-
uation from transition programs and
referring to such programs as “college.”
Joan discussed the role that she
played in removing her daughter from
an unsuccessful job experience that
she described as “total chaos.” Joan
not only had to advocate for her
daughter in removing her from the
work setting but also had to continue
coordinating such services as trans-
portation and home support around
Kate’s new schedule. Even when Kate
was working, her mother was primari-
ly responsible for managing these day-
to-day activities. Such examples high-
lighted the ongoing support that par-
ents still had to provide for their chil-
dren when they were in the workplace.
Although mothers described the role
that other people, such as group home
staff, played in helping their children
achieve independence, they clarified
that “most of the important decisions
still come through us.” Sharon
explained, “medically, financially, we
do all that stuff for her . . . people
don’t see that additional stress of caring
for a child that’s an adult but still has
significant needs.” Pam explained that
the preparation that she and her hus-
band furnished for Adam in his transi-
tion to adulthood involved their volun-
62. teering together at the public library
and a local animal shelter, as well as
allowing him to scan groceries and
handle money when shopping. Pam
commented, “We are trying to prepare
him for real-world things, but it often
takes so long for him to do something
that I just rush in and do it myself
because I’m not patient.” Both she and
her husband worked in demanding full-
time jobs, and the need to maintain
regular communication with Adam’s
teacher and adult service providers—in
addition to attending meetings, explor-
ing employment and housing options,
setting up a special needs trust, and
wading through complicated Social
Security and medical assistance appli-
cations—were additional responsibili-
ties that they had to juggle.
The stories that mothers shared
illustrated the reality of independence
for these young adults with disabilities.
Parents needed to perform certain tasks
on their children’s behalf, and mothers
understood that they would need to
provide lifelong support. Even though
these young adults faced limitations in
what they could achieve independent-
ly, their mothers emphasized the
importance of giving them opportuni-
ties to explore themselves and their
options. In the words of one mother:
63. “You’ve got to make sure you don’t
close the door on someone right away
because they make a mistake.”
Transition as an Ongoing Process
The mothers described the transition
process as a journey that began the day
that their child was born. Joan reflect-
ed, “I’ve been very appreciative and
blessed that in our journey, we’re not
alone. Not that we were planning on
going on the journey, but it’s not a bad
journey.” Sharon reiterated the impor-
tance of the support of others on this
journey: “It’s hard, so it’s nice to have
people around you to support you. Not
to coddle you, just to support you.”
The mothers viewed the transition
process as an ongoing quest for options
and opportunities for their children.
They spoke of personal research as a
means to better understand their child’s
particular disability, as well as a means
of coping and making sense of their
unplanned roles as mothers of children
with disabilities. Joan offered that her
method was to “read and read and
study and study and study.” The moth-
ers also appreciated the knowledge and
information that professionals shared.
Val explained, “They knew all the
places and people to get into contact
with, opportunities, choices we had.”
64. 32 COUNCIL FOR EXCEPTIONAL CHILDREN
The mothers viewed the transition process as an ongoing
quest for options and opportunities for their children.
Each of the mothers spoke of the
importance of initiating the transition
process early, as an end-in-mind
process. Joan described this end-in-
mind process as looking
. . . 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.
Sharon rationalized the urgency of
starting the process early by contrast-
ing the transition process for her chil-
dren without disabilities with the tran-
sition process for her daughter who
had a disability. She explained, “With
a child with a disability, you’re con-
stantly thinking of what’s going to hap-
pen to that child when you’re not
around . . . you start the process earli-
er because there are so many more
65. unknowns.”
Val echoed the importance of initiat-
ing the process early and recommend-
ed that parents make a conscious deci-
sion to acknowledge that their child
will someday leave home. She stated,
I would tell them [other parents]
to start preparing now. That’s
one of the biggest things; parents
like to put it off so they’re not
facing their child leaving home,
and it’s a mistake because it’s a
lot harder to do later.
Pam focused on the difficult experi-
ence of going through the legal aspects
of adulthood. She explained
The guardianship was the hard-
est. You spend all these years
celebrating all his competencies
in these minor areas, like count-
ing money, he could find the
butter in the grocery store with-
out being told where it is, or
something like that, and then
you basically go to a judge and
have him judge your child to be
incompetent. And it has to be
done so that he’s not able to sign
legal contracts and things like
that and be taken advantage of
in a big world. But it is still a
really tough day.
66. All mothers discussed the impor-
tance of preparing their children with
realistic skills that help make them
ready for adulthood. They spoke of the
need to include more opportunities for
their children to develop skills in real-
life environments, including learning
such streetwise skills as how to behave
with strangers. Joan suggested,
Just getting out into the real
world, even if it’s just an hour-a-
day job situation and getting a
change and a little less under the
wing of the intensive support
that we sometimes provide stu-
dents; they’re not going to get
that [in the future]. It’s not like
you are going to have your own
little para follow you around at
work.
Although some consider the transi-
tion process to be completed when an
individual has secured a job and a sat-
isfactory housing situation, the moth-
ers in this study challenged that
notion. Joan considered her daughter’s
present situation and the future:
I think her housing situation is a
really good fit for her right now.
It’s still hard for me to picture
any less restrictive setting for her
right now . . . . Just because it’s
67. working right now doesn’t mean
it has to stay that way.
Joan shared similar thoughts about
her daughter’s employment situation:
I would like to see her moved
into a different type of work
rather than just cleaning . . . .
It’s very easy to just sit back and
relax . . . . She’s still growing
and learning . . . . If you look at
your own experiences or your
other kids, they’re still taking in
those life experiences . . . and
we are never done; I know that.
And I want to give her the same
window of opportunity that we
would give anybody.
Communication and Support
From Teachers
The mothers valued consistent and
respectful communication from teach-
ers. Pam stated,
We e-mail the teacher at least
once a week, if not five times
a day, depending on what’s
going on. She knows that Adam
doesn’t report accurately so if
something odd happens, she will
e-mail that this is what hap-
pened and I have no idea what
68. Adam will tell you, but this is
what really happened.
This type of information from the
teacher assisted Pam when she com-
municated with Adam at home.
Mothers encouraged teachers to hon-
estly and bravely address the tough
issues with parents. Sharon comment-
ed that when teachers engaged in
respectful dialogue with her, she was
more prone to accept what she consid-
ered to be questionable management of
her daughter. She shared, “I thought
how they treated her shutting down
wasn’t appropriate, but I never felt like
I was looked down on; they were
respectful of me.”
All mothers expressed gratitude that
teachers provided information about
community resources and future pro-
gramming opportunities. Pam stated,
It’s been hard to go through all
these different steps, but the
social service people and the
school people have continually
reinforced, “Have I done these
things yet?” “Are you remember-
ing that this happens when he
turns this age?” Things like that.
So they are constantly prompting
and educating us as we go
through these different phases of
his life.
69. She also requested that teachers
share the information, and share
repeatedly because “people don’t retain
what they don’t expect to use.” Joan
expressed the disappointment that
some parents experienced when the
lines of communication were weak:
“You hear repeatedly from parents, ‘I
didn’t hear anything about that from
the school.’ You just get a little sad that
there’s a breakdown there someplace.”
One of the mothers explained
There are flyers all the time at
school when you are in first
grade, things just come home all
the time. In middle school and
high school, those flyers stop
and the kids are supposed to
know what’s going on and you
get no information coming home
TEACHING EXCEPTIONAL CHILDREN � JULY/AUG 2009
33
34 COUNCIL FOR EXCEPTIONAL CHILDREN
Table 2. Transition Resources
Name of Resource Description
Annie E. Casey Foundation
(www.aecf.org)
70. This organization serves children in foster care and children
who are at risk for poor
educational, economic, social, and health outcomes. It provides
printed resources on a
wide variety of topics, including a page for Youth
Transition/Youth Development.
Family Village: A Global Village of
Disability-Related Resources
(www.familyvillage.wisc.edu)
This site furnishes information, resources, and opportunities
available on the Internet
for individuals with disabilities, their families, and service
providers.
A wide variety of links to Web resources pertain to transition.
Healthy & Ready to Work National
Center (www.hrtw.org)
This site gives connections to nationwide health and transition
expertise and
focuses on understanding systems, access to quality health care,
and increasing the
involvement of youth. It also includes resources needed to make
informed choices.
National Center on Secondary
Education and Transition
(www.ncset.org)
This site furnishes resources, offers technical assistance, and
disseminates
information related to secondary education and transition for
youth with disabilities.
71. Many resources are available in English and Spanish.
National Dissemination Center
for Children with Disabilities
(NICHCY; www.nichcy.org)
This site provides a wealth of resources from a variety of
nationally-recognized
sources. It includes Web pages with links to Transitions 101,
resources for parents,
resources for students, resources for professionals, and
transition and specific
disabilities.
PACER Center (www.pacer.org) This site includes a
comprehensive catalogue of publications. The mission of the
PACER Center is to enhance the quality of life of children and
young adults with
disabilities and their families and is based on the concept of
parents helping parents.
Technical Assistance on Transition
and the Rehabilitation Act (TATRA)
(www.pacer.org/tatra/index.asp)
The TATRA project at the PACER Center and other parent
information and training
projects help families learn how they can assist young people
with disabilities
prepare for independent adult life in the community.
Parenting Postsecondary Students
with Disabilities
(www.heath.gwu.edu/node/209)
This site, from the nation's clearinghouse on postsecondary
72. education for
individuals with disabilities, discusses how to become a mentor
and advocate
to promote the needs of young adults.
Directory of Independent Living
Centers Nationwide
(www.virtualcil.net/cils)
This site provides a nationwide map with links to centers for
independent living
that furnish several core services: advocacy, independent living
skills training,
information and referral, and peer counseling.
The Arc of the United States
(www.thearc.org)
The Arc is the world's largest community-based organization for
people with
intellectual and developmental disabilities. The site includes an
array of information
with links to state and local chapters.
National Secondary Transition
Technical Assistance Center
(NTTAC; www.nsttac.org)
NTTAC provides support and information to states, local
educational agencies,
practitioners, researchers, parents, and students regarding
effective transition
education that can enhance postschool outcomes.
National Youth Leadership Network
(NYLN; http://nyln.org)
73. NYLN furnishes a national voice for young leaders with
disabilities. The Web site
includes a variety of resources, including a list of young leaders
who speak on a
variety of topics.
about dances, football games;
you get nothing. So it is lovely
when the teacher e-mails us or
forwards something and says,
“oh did you know this is going
on?” It is extra work and extra
time, but we really appreciate it.
Pam emphasized the importance of
getting involved in community organi-
zations: “I know who to call and I
know what my options are, but if I had
not been in these committees or gone
to the seminars, I would not have a
clue.” Joan also issued a cautionary
reminder; parents need guidance about
how to ask the right questions. She
commented,
Too often it seems like if you
don’t ask the right question, you
won’t get the right answer. But if
you don’t know the right ques-
tion, how are you going to
know? I think that is the dilem-
ma that parents have.
74. According to Lustig (2002), the
degree to which family members pos-
sess strategies for seeking help can
affect their caregiving experience.
Given this situation, it is worth noting
Pam’s recommendation for parents:
“Go to the school meetings and keep
questioning people and stay involved.
It all comes to you when you need it if
you have your hand in it.”
The mothers conveyed that they felt
supported by teachers who shared sim-
ilar or enhanced visions of their chil-
dren’s abilities and future outcomes.
Sharon described her daughter’s transi-
tion-process experience in this way:
“[It was] more smooth than I ever
expected due to the teachers and the
support I felt from them.” Referring to
Lisa’s case manager, she said, “She
had the same vision I do that to the
best of Lisa’s abilities, we are going to
pursue areas that she can do . . . and
allow her to be herself.” Pam shared a
similar appreciation and delight for the
teacher’s belief in her son’s abilities:
She is very aware of his skills
and she’s watching to pick up
and take the ball and go run
with it with him and I think she
will actually get him to do more
things with him than I would
think possible.
75. Final Thoughts
The case manager plays a crucial role
in communicating with parents and in
fostering collaborative transition plan-
ning. Case managers should acknowl-
edge the family stress that revolves
around the student’s ongoing needs
and should give parents connections to
community supports and resources
(see Table 2). To nurture parents’
involvement in the transition-planning
process, case managers must maintain
honest and respectful communication
with parents while respecting the fami-
ly’s vision for their child’s future.
Furthermore, case managers must view
all family members as knowledgeable
and valued participants in planning.
The case manager should look beyond
the student’s current status and pro-
vide opportunities for him or her to
learn needed skills in environments
that are as real-life and age-appropriate
as possible, allowing each child the
opportunity to grow into an independ-
ent, successful, and happy adult.
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TEACHING Exceptional Children, Vol. 41,
No. 6, pp. 28–36
Copyright 2009 CEC.
36 COUNCIL FOR EXCEPTIONAL CHILDREN