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Jordan Knab: Good
afternoon, everyone. My name is Jordan Knab and I'm with
the Academy for Educational Development in Washington, D.
C. Welcome to the monthly audio conference sponsored by
the National Transition Alliance. Today's topic is
Partnering with Parents of Youth with Disabilities in the
Transition Process. Today we have a panel of three
speakers. Amy Pleet, a Transition Specialist with the
Maryland State Department of Education, will begin the
dialog. Following Amy will be Suzanne Ripley, Director of
NICHCY, The National Information Center for Children and
Youth with Disabilities. And last but not least, we will
hear from Linda McKelvy-Chik, a Training Coordinator with
PEATC, for Parent Educational Advocacy Training Center in
Virginia.
We would like to invite questions from the audience
after the last speaker has presented. Amy, you can go
ahead, please.
Amy Pleet: Good afternoon, everyone,
or morning if it is morning where you are. I want to
start off the dialog by looking at the role that schools
should play in partnering with parents. I think that a
paradigm shift is occurring there.
Historically, when you think about parent involvement
in special education, especially during transition, you
think about parents as being involved in the IEP process.
You think about parents as being involved as volunteers
in the school (less frequently as students advance in
years) and parents as advocates for their children. But
what do I mean when I speak about this paradigm shift?
The old paradigm has parents involved in the bake sale,
as volunteers that keep the school running, and on the
sidelines. Parents are the home nurturers who make sure
the students are prepared to learn in school. Parents are
PTA leaders.
In the new paradigm, parents are involved on advisory
boards, with program development and program evaluation,
as life-long teachers of their children, as informed
partners with the school, and as lobbyists and advocates
who can be very powerful before boards of education.
Let me say more about parents as informed
partners. I see that each one of the speakers
today is talking about partnering. I want to make sure
that we are looking at a definition of partnering as the
business world would use.
Within the business community, partners are considered
as people who have varying expertise. If I were going to
set up a business partnership with any one of you, we
would look at what you are expert in, what I am expert
in, and then we would join forces with a united purpose.
What is our cause, what is our mission, and what is it we
want to accomplish? Please keep this distinction of
partnership in mind as we are considering partnerships
with parents.
Back in l994 when Goals 2000 was passed, Goal Eight
stated that by the year 2000, every school will promote
partnerships that will increase parental involvement and
participation in promoting the social, emotional, and
academic growth of children. Since that time, the United
States Department of Education has funded a number of
different publications and resources to help schools
across the nation build partnerships with families. Each
one of these depicts a stage in the shifting paradigm of
parent partnerships. The first ones talked about parents'
role at home, making sure the students were ready to come
to school. The most recent publications discuss the role
of schools to reach out to families and to build this
kind of partnership. And so, we see a change in the way
IDEA talks about parent partnerships. It is no longer
just having the parents come to the IEP table.
When I looked at how parent involvement and parent
partnerships were measured in the research, I discovered
that most of the research focused on whether parents
attended the IEP meeting, whether the parent signed the
IEP, the number of intervals that a parent speaks at an
IEP meeting, or parent ratings of their participation in
their IEP meetings. Measures of parent involvement seem
to focus around the process of the IEP meeting, but they
do not really look at what partnership is.
Next, I looked at what IDEA 97 requires; there are
five components of parent involvement. The first
is using parents on the state advisory panel, and there
are some very specific requirements about the make-up of
the state advisory panel, with more than 50% of the panel
being comprised of either individuals with disabilities
or parents of students with disabilities. This panel must
comment publicly on rules and regulations proposed by the
state and so on. That is all available in IDEA for you to
take a look at.
The second role of parents in IDEA is
to be involved in the design, evaluation, and
implementation of school-based or state-level-based
improvement plans. So, parents are to be intimately
involved as partners in that part of the process.
The third is a new related service:
parent counseling and training that can be written onto a
child's IEP. If a team feels that parents need
information about child development, helping parents to
acquire skills that will allow them to support the
implementation of their child's IEP, then schools can
extend this support to parents.
The fourth aspect of parent
partnership is in terms of monitoring. Parents must be
involved when states monitor their local school systems
and when the Federal Office of Special Education is
monitoring the states.
And then the fifth aspect of parent
involvement in IDEA is what we have seen for a long time
about parental rights in terms of the IEP process, the
ten-day notice and so on; that is still there.
So, I investigated where special educators could find
assistance in how to build partnerships in special
education to meet these new requirements under IDEA. I
came across research on parent involvement coordinated by
Dr. Joyce Epstein at Johns Hopkins University. Her
center, funded by federal grants, has coordinated the
research of three hundred researchers around the world
over the last 30 years. Out of this research base, her
center developed the Epstein Six Types — ways to
involve families in education, to truly build
partnerships with families. I saw that this research was
very seldom cited in special education literature, and I
think it is worth examining at this time as we are
shifting our paradigm to partnership.
The National PTA standards, which came out in 1997,
are based on the six types of involvement that Epstein
talks about. If you go to the Web site for the National
PTA at http://www.pta.org,
you can download a copy of the National PTA standards
document or you can order it.
The National PTA states in their introduction that
“over thirty years of research has proven beyond
dispute the positive connection between parent
involvement and student success. Effectively engaging
parents and families in the education of their children
has a potential to be far more transformational than any
other type of education reform.”
I took a look at these six standards (based on the
Epstein Six Types) and ran focus groups for three years
with professionals, including transition specialists,
family involvement specialists, and special educators,
asking them to generate lists of activities they were
currently doing to involve families as partners in the
special education transition process. We attempted to fit
these activities under the six standards and came up with
a list of twenty activities. Now, saying that there are
six standards does not mean you have to do six times as
many activities. One activity could meet all six of the
standards. Let me give you an example. Take a transition
fair, which is fairly common. You have representatives
from the community agencies there — that is,
standard six — collaborating with the community. If,
ahead of time, you give the parents some information so
they are prepared to access information (a checklist or a
list of questions) then you have helped those parents
with parenting their son or daughter as they go through
the fair. If you give them some coaching on how they can
work with their son or daughter, not just the list but
you have actually worked with them, sent home some
information or called them or talked to them or run a
workshop ahead of time or even a workshop that day
serving as a little orientation, “Here is how you
can help your son or daughter go to these different
tables and talk to the agencies,” then you have
worked with standard student learning at home. Of course,
communicating is another one of the standards and that is
involved in all aspects of this activity.
I have given you a little sample. You can take one
activity and expand its design so that you meet several
of the six standards.
How do we find out which parent involvement activities
will make a difference in students' post-school outcomes?
After all, we live in the age of looking at outcomes, not
just that it is nice to hold the activity, but what
difference did it make?
So, in Maryland I conducted a study. I invited all
twenty-four local school systems to participate with me
in a pilot study. Five agreed. So, I used five school
systems, eighteen high schools. We looked at all of the
graduates of 1998 who had been receiving special
education services and who graduated with a diploma. I
then surveyed the transition provider in each high school
who worked with students to find out what parent
involvement activities had occurred and what transition
components the students had been involved in: Were they
in a paid work or unpaid work-based learning situation, a
career exploration course, or a whole sequence of career
courses? I wanted to identify the students' participation
in predictor activities since research has shown that
participation in these activities seems to predict
success and impact outcomes.
Then I also sent surveys to the families of those 262
students. I had a 50% response rate. I compared what the
parents said was offered to them with what their
professional said had been offered to these same
families. There was a difference between what parents
perceived as offered versus what the professional said,
which I guess was not a surprise. We pride ourselves in
doing great activities, but what good are they if parents
don't know about them?
I also analyzed the transition components for those
schools and found that of the eighteen, twelve schools
had very strong transition components. So I did the
further analysis on those twelve high schools. I looked
at how many students were successful in post-school
outcomes including accessing further education and
training, community involvement, residence,
transportation, and access of supportive adult
organizations. Then, with the agreement of an expert
panel, I designated which students were overall
successful graduates from high school.
Then I looked at comparing the twelve high schools
with strong transition components. I looked at each one
of the six types of parent involvement, for example, type
six: collaborating with the community. Which schools had
a lot of parent participation: more than 60% of the
parents participated in activities that fit the
collaborating with the community standard. Then I looked
to see the difference in student successful outcomes
between the schools having high parental participation
and low parental participation. There was a difference of
about 10%. That is, 10% more students were successful if
schools had high parent participation. This was true in
each of those standards with the exception of one. There
was a much bigger gap if schools had high parental
participation in parenting activities (where they worked
with the parents on how to be a parent to an adolescent
going through the transition stage). In schools where
there were workshops or some other activities for
families to help them to develop the parenting skills, a
higher percentage of students had successful outcomes.
So, that is a quick synopsis of a long dissertation.
After the other two speakers, I am open for questions.
Jordan Knab: Thanks, Amy. I would
like to tell everybody that Amy Pleet will be discussing
her research in greater depth in the September NTA audio
conference and an announcement will be sent out closer to
that time. Go ahead, Suzanne.
Suzanne Ripley: Hi. I wanted to point
out, which will become apparent as I speak, that I am the
parent of two kids, one of whom is just in the final
stages of the transition process and the other one is a
veteran of the transition process. I am going to speak
from the perspective of somebody's mother with a little
mix on my experience from years and years and years of
listening to the questions of other families and
professionals through my work with NICHCY.
I think one of the major goals that no one would argue
with, a goal of the whole transition process, is
employment opportunities for young people with
disabilities. This includes young people with mental
retardation and severe disabilities, those that are
frequently the most difficult to successfully transition.
Amy, I really liked your definition of partners and the
business definition of having information with varying
expertise so that they can join forces, because that is
very much what I want to talk about.
The challenge for young people in transition and for
their families is that they have just come out of twelve,
fifteen, or eighteen years of relying on specialists to
help them with everything. The schools certainly have
been the ones who have been providing a lot of services
and direction and support. With adult services, a lot is
done through the organization as well; services such as
Rehab, the Department of Rehab Services, supportive
employment agencies and the like who often have many
clients, limited staff, and waiting lists. Young adults
waiting to find work can become very easily discouraged
and their families, too, can become discouraged. Having a
gap between school and employment is something to really
be avoided.
One of the solutions, obviously, is to start early so
that something is already in place by transition. The
solution that I particularly want to focus on is parent
and family members as partners. These are people who know
the young person, their strengths, their difficulties,
and their interests. Family is a part of the community
and has connections. The biggest benefit is that the
family typically only has one client. Families can become
the primary job development specialists, and they can
work collaboratively with whatever agencies are
appropriate and exist in their state or part of the
state. This kind of collaboration needs to be encouraged
by the adult agencies, schools, and families, so that
this kind of working relationship is there.
It is interesting because, if you think back on your
experiences of getting your first job, whether it was
babysitting or mowing lawns or the first job after
finishing your education, a lot of it was through
connections that you had; personal connections or
connections through your family. It seems odd that the
kids that are the hardest to place would be the ones who
are removed from that system.
Families can look for job opportunities in the
community. They can talk to friends and associates. They
can read the classified ads. They can read signs in
windows. They can talk to the people in the businesses
where they shop. Families can talk to the young person to
help expand experiences and broaden horizons. A lot of
times young people's range of ideas of what might be
available to them are limited by what there was time for
in school or where access was. The family can really
broaden the outlook of the young person into what might
be a possible work opportunity or work location or type
of work. Families can take their children — I keep
saying children, and these are not necessarily children
but they are still the family's children — to
various businesses in the community and can talk to the
people working in the places that they frequent. You
always talk to the clerk in the grocery store. You've
frequently talk to clerks in the drug stores and the
different places where you do business.
Now, I am going to give you some personal examples
here. Initial jobs are frequently the hardest and the
most important because they are where the community first
gets experience with the person and where you begin to
build a resume. I think one needs to look at this
somewhat creatively. Frequently there is a tendency to
say, “Well, now what can this boy or girl do
well,” and that is the sort of job we should look
for, when, in fact, perhaps the other way around might be
more effective. What place is most likely to hire
somebody like my son or like my daughter?
So, for example, when my son was fourteen, a lot of
his friends had jobs and he wanted a job. We started
looking around and he has moderate Cerebral Palsy, mild
mental retardation, spinal cord difficulties, fragile
health, severe language problems, and low vision. Who is
going to hire a person like this? I found a place not far
from us called Lazarus At The Gate. I said, “Well,
that is a good start, I like the name.” They were a
food repository, the place that, when the Cub Scouts
collect all those cans, that is where they go; when you
put food into the basket outside your grocery, that is
where it goes. Lazarus was an all-volunteer place, and
they hired my son to put all of the canned vegetables
with canned vegetables and all the bags of rice with the
bags of rice and, well, you get the idea.
He did not do a particularly good job. He does not see
well. He messed up labels. He could not carry the boxes
to the cars when people came to pick them up. But it was
after all a volunteer group and it would be hard for a
place supported by local churches to say, “Well,
gee, we do not want you because of your
disabilities,” so they kept him. He stayed there for
about four or five months, at which point we started
looking for a real job, i.e., a place that had more hours
and the potential to get paid. We found a local hospital
that had a volunteer program and was hiring people in
shipping and receiving, which was much more appropriate
to Alex's skills. However, they also had a lot of
applicants and looked at this child who had so many
disabilities and said, “Well, I don't know, do you
think he could do the job?” Well, at this point he
had a resume. He was working for Lazarus at the Gate. So
we said, “Well, yes, he is currently employed,”
and the hospital said, “Well, can we talk to his
current employer?” I said, “Yes, certainly, and
gave him the name and number.” You can figure out
the rest. When Lazarus at the Gate got a call that
someone else was interested in hiring this boy that they
did not really know what to with, he got a stellar
review, got the job at the hospital, and began his
resume. He had his first placement and had now had two
jobs.
Taking the lead in identifying job sites is a really
appropriate role for families. Developing a resume is an
appropriate role for families. I think we tend to think
of developing resumes as developing the written document.
I think of it as having something to write about. You
have to have those first jobs that you can talk about; it
is not just about how you present them on the paper.
Contacting potential employers is also something that
families can do sometimes even better than schools or
adult agencies because they have fewer restrictions on
how they do it.
To give you another example, my second son, Joe, was
looking for work and at this point was about eighteen. I
was driving down the street and passed a construction
site with a big sign that said they were looking for
help. I pulled in and read the sign and got the name of
where to apply. It was a health food grocery store, Bread
and Circus, which has subsequently been bought out by
Fresh Fields, for those of you who are familiar with it.
I had to fill out an application form and mail it in.
Now, Joseph is mild to moderately retarded, has a few
physical problems, but more in the area of poor
coordination than anything more serious than that, and
also has pretty severe speech and language problems, but
has fewer disabilities than Alex. I was faced with this
letter of application and no way to explain that he was
not like every other applicant. I was trying to think how
to handle it and decided to fill out the application and
attach a letter. I am going to read you the letter. This
is where parents can do things schools and adult agencies
can't. I've forgotten the name of the woman so I will
call her Mrs. Jones.
[The letter went as follows:]
Dear Mrs. Jones:
Enclosed please find an application from my
son, Joe. Already I can imagine you saying to
yourself, who is writing this letter? I am Joe's
mother. I am writing this letter because Joe does not
write. Joe is retarded. Some people think retarded
means a person can't do much, but let me tell you
what Joe can do. He is strong and energetic and wants
to work for you. He can follow directions. He can
carry heavy boxes. He can keep your storeroom clean.
He can make everyone around him smile. Joe has had
some work experience through his high school program
and a variety of placements doing cleaning and
grounds maintenance.
I will make two assumptions about you. First,
that you have probably never worked with someone who
is retarded. Basically what retarded means is that
Joe will learn new tasks slower than other employees,
but he will learn. There are some things Joe may
never learn, but there are more things that he will.
Also, the school system will provide a job coach to
come to work with Joe and the job coach will help Joe
learn the tasks you assign him. The job coach will
help him to learn the tasks assigned to him and the
coach will stay with Joe until you are comfortable
with Joe's performance.
The second assumption is based on your
affiliation with natural foods and the healthy living
approach to life. I will assume that you think of
yourself and your company as opened-minded and
creative. I would like to offer you an opportunity to
express your creativity. This is an opportunity to
see in Joe what is possible where other people often
see only what is not. This is an opportunity to work
with someone who needs a chance to show that he is a
valuable person with something to contribute to the
community. This is an opportunity for you to
demonstrate to the community your support for all of
its citizens.
If you would like to accept this offer, please
give Joe and me a call. We are available for an
interview any day, preferably after three and we look
forward to meeting with you.
I got an answer to that letter. I got a call rather
immediately. We got the interview and Joe did get the
job, which is where the partnership comes in.
I think parents can play an important role as job
development specialists. I do not see parents as
particularly good in the role of job support. Once we had
set up the interview for Joe, the adult agency came in to
send somebody to go to the interview with Joe, to provide
job training, to provide job support, and to provide
disability awareness training to co-workers, managers,
and others as appropriate. That is a very important part
of the partnership. I think families are inappropriate in
providing disability awareness or helping to make
managers and co-workers more comfortable. They really are
more comfortable talking to somebody who is not the
person's parents or family members.
Another example, when my older son was looking for
work, the agency that he was associated with had not been
able to find a placement for him. They were busy. They
had talked to several places and had not gotten anywhere.
I was reading the newspaper and found an opportunity for
him to interview and had called the agency and said,
“Can you send somebody to the interview with
him?” and they could. The job was with a fast food
place that was having one of those interviews where
everybody comes and talks to a bank of interviewers. I
called ahead to establish which interviewer might have
some experience working with folks with disabilities so
that we would have a name, and we would not be walking in
cold. Then the supported employment agency went with Alex
to the interview. Later, when he was offered the job,
they went to the job orientation with him, talked to the
employers, helped him get a uniform and schedule, find
where the bus was, buy the special bus tickets, get the
identification for reduced bus fare, and negotiate with
the security people. This job that Alex got was in an
airport, so there was a lot of negotiation of the
physical plan to get to and from the restaurant.
Again, that is where the partnership comes in. The
parents can help develop the opportunity and get the
interview all lined up. The agency can then help with all
of the details of putting together the job itself and
providing the training. The family and the adult service
agencies can work together on all the things that have to
be in place once the interview has taken place and the
job is eminent, which includes negotiating schedules.
Again, this has to be shared since often the family will
have to help with transportation or help the young person
in one way or another to get ready to go to work or to
get back from work. Schedules need to be something that
are worked on together.
Interestingly enough, Alex, with all of his
disabilities, is very independent, rides the bus alone,
can get himself to and from work, and can handle almost
everything. There is only one thing he can't do and it is
overwhelming. He can't tie his shoes. So, in fact, what
time he goes to work is critical. Someone has to be home
to tie his shoes. The family and the agencies can work
together to negotiate benefits. We wanted a job that came
with health insurance, so we only looked for jobs that
offered health benefits. The family and the adult
agencies can work together to keep current on Social
Security benefits and all of the paper work that needs to
be done. The agencies will be much better aware of what
paper work has to be filled in but families, in turn, may
have to fill it in. Another complication is that most of
the adult agencies, certainly all of them I know, send
the letters to the client. They send them to Alex. Alex
does not read. If I do not know that letters are coming
or if I do not get a copy of the letter, the people who
sent the letter are not going to get a reply. Whole
systems can break down right there.
So, again, you have to work together so that there are
arrangements that the family is aware of what paper work
needs to be completed.
Getting appropriate ID's, getting bus passes, and
learning how to use buses or other forms of
transportation are joint processes. Working together to
learn work culture is very important. How does one behave
on this job? How does one dress for this job? How is
lunch handled at this job? Do people bring their lunch?
Do they go out to lunch? Do they go to lunch together? Do
they go to lunch alone? How are breaks handled? All of
those things vary job by job. In some cases, there is the
uniform and that solves the problem, but in other cases,
you need to learn what it is that is acceptable on that
job site, and again that is information that has to be
shared between the agency, the client, and the family.
Then, finally, even when the job is there and the
person is working and everything seems to be just fine,
there has to be an ongoing contact. We have to stay in
touch with each other. Alex has been in his job now for
almost a year and things seem to be going pretty well,
but Lori, who is his job coach, now visits the airport
once a month just to see how Alex is doing and if anybody
has any questions. Also, her phone number is with the
employer. So, if anything comes up and there are any
questions or any needs, there is a person they can
contact. This is critical. It is the difference between
having a job and losing a job.
One of the issues that came up as Lori went in for one
of her monthly checks was that Alex had fallen three
times at work. He never admitted this to me because he
never tells me when he falls. The people at work had
never called me because they do not call another adult's
mother. But the employer became aware that he was falling
and he wanted to terminate the employment. He was worried
about liability issues. He was worried about a lot of
things. It was a concern that any employer might have. I
would never have known about this. People would have just
one day announced that the job was over, and I would have
never known why. Instead, Lori found this out at one of
her routine visits by talking to co-workers. She called
me and said that there was a concern because Alex had
fallen. She went to the employer and asked him if he had
any concerns or if there were any problems on the job. He
mentioned the falling and he said he was worried whether,
in fact, this was an appropriate placement for Alex. He
was very politically correct, but I know that his
question was, “What is our liability? Is this person
going to be hurt on the job?” He asked her to, in
turn, ask me. He never talked to me, but he asked us if
we would get a letter from Alex's doctor letting the firm
know that this was an appropriate placement. It seemed to
me that that really was not the question. The question
was what their attorneys would think, not what Alex's
doctors thought. So, I did not go to his doctor, but went
to an attorney where I work. I said, “If you had an
employee who had fallen several times at work and you
were worried about a lawsuit, what would it have to say
in a letter that would keep you from worrying?” I
got some language from the attorneys and I took that
language to the doctor and said, “Would you write a
letter to the employer and would you use these phrases
somewhere in the letter? Use all of them.” The
doctor said, “Fine.” The letter went to the
employer and Alex is still there. An ongoing
communication is vital.
So, by working together, the young person has a job,
is developing a resume for future promotions, and is
developing experience, training, and a resume for future
jobs. The young person is learning all the work skills
and all the work-related skills such as use of public
transportation, job behavior, and following directions,
as well as specific job skills. The young person becomes
more employable and more independent the more places he
works and the longer he is employed. The family is
healthier as the young person becomes more independent.
Other agencies benefit. Social Security is paying less or
potentially nothing. In our state, the Community Services
Board can drop the case, the Department of Rehabilitation
Services can close the case. The community sees the young
person as a contributor to life in the community, which
is, of course, the ultimate goal. Maybe one step even
more ultimate than that is that each of these young
people sets an example for all the youth who are going to
follow them into the job market.
Jordan Knab: Thank you, Suzanne.
Thanks a lot for sharing. Go ahead, Linda.
Linda McKelvy Chik: Hi everybody, I
am Linda McKelvy Chik with PEATC, the Parent Educational
Advocacy Training Center, and I have a son, Jeffrey, who
is thirty. My focus is a little bit different in that I
think it is important that we remember that success it
not necessarily having a job, although for a lot of
students that is a goal. All we have to do is look at the
unemployment rate for people with disabilities to
understand that it is not a very good measure of success.
Certainly, for our son, that has not been one of his
areas of success. He has tried a variety of jobs. We live
in a small, rural community, where jobs are hard to come
by. There is no public transportation or the kind of
support that Suzanne talked about.
Jeffrey has tried different things; but if we had
waited to work on other goals for Jeffrey to be
successful in his job life, he would still be sitting at
home. Today Jeffrey lives what Ann Turnbull calls an
“enviable life.” One of the other goals that he
had for his life was to live independently; he wanted to
have his own place and so that was the area that we
concentrated on as Jeffrey began to look toward
graduation and moving into the community. For the last
eight years, Jeffrey has, indeed, lived first in an
apartment with two roommates and now he has three. That
happened because of a commitment on his part, on the part
of several young men who were graduating high school at
that time, and their families who believed that this was
an area in which we could be successful in our community.
Our rural community may have been lacking jobs, but it
certainly had a commitment to support these young people
in their wants and their needs.
So, it was serendipitous in that it was a time when a
lot of the institutions were bringing people back to
their own communities. There was Medicaid Waiver money
available and a Community Services Board that believed
that these young people had a right to live as
contributing members in their community.
We started out by renting two separate apartments, two
young men in each apartment, in a pretty large apartment
complex. Most of the people that lived there were like
them: young, single, and just getting started. There was
not any of that looking over their shoulders, “not
in my neighborhood” kind of attitude that we ran
into a little bit later. They lived in that apartment
complex for over six years. They went to the local
library and grocery stores and were just a part of their
community. It was pretty amazing to see how these two
young men and the two young men in the other apartment
actually felt comfortable and were a part of the
community that they lived in.
A couple of years ago, we decided that staffing was a
nightmare because they had staff in the apartments when
the guys were at home, but during the nighttime hours
they rotated staff between the two apartments. That had
become a bit of a nightmare for staff and a fear for
their families, so we found a house in a subdivision. Of
course, the neighbors got wind of it and put up a fuss
and went to the Community Services Board with their
strong protests. Once again, families rallied along with
the Community Services Board. It took us a couple of
months, but they did finally move into that house. As a
parent, I'll admit I struggled with it. I thought this
was a more institutional setting with four of them
together and more of what we were moving away from. I
felt the apartments provided them with a neighborhood and
a sense of belonging. However, now as I look back over
the last year and a half that they have been there, I
realize that they have taken such tremendous pride in the
fact that they have their own house. It is very
different. They have their own backyard, and they have
picnics and they invite people in. The staff make sure
that they do not go, all four of them, off in a bus
together. They provide one-on-one activities in the
community. They drive cars rather than vans and buses.
But the guys really are a part of that community. They
are friends among themselves. I think it is just a dream
that we all have that our kids with disabilities will
grow up to be a part of a community and have close
friendships and activities that they do. I feel
comfortable in knowing that a couple of years ago I
remarried and moved out of the community, and it just did
not occur to me to ask Jeffrey to move with me. I could
not have taken the rejection; that is home for him.
At PEATC, we developed what we call the Guide to
Futures Planning. It is a part of a series of workshops
called Next Steps: The Transition Series, which is a
curriculum that we use with families who are in the
process of transitioning. We have the guide on our Web
site at http://www.peatc.org
for families and students to access. I hope you will go
look at it. What this guide does is look at all facets of
a young person's life. It looks at job goals, as well as
future schooling, living arrangements, future recreation,
and social/friendship kinds of things. It allows the
student to actually fill out the planning guide, focusing
on their strengths, experiences, interests, and dreams
rather than on the parents' dreams and interests.
On the site there is a blank form, and then there are
hotlinks to a young man named Jim, who looks an awful lot
like a young man I know, who has cognitive disabilities
and, therefore, his goals are job oriented. Then there is
a young lady whose name is Mary, and her goals are to go
on to college and to also live independently. So, a
student can, with his parent, by himself, or with a
teacher, go into the web site and actually fill out the
form. If they get stumped on what informal or formal
supports are, they can go to either Jim's or Mary's guide
and get concrete examples.
The guide looks at all facets of the young person's
life so that they can focus on the most immediate goals
or the most immediate needs and are not sitting around
waiting until that job comes along before they move onto
the next area in their life.
The story that I always share when I talk about
Jeffrey transitioning is that for the first couple of
years that Jeffrey lived in his apartment I would call
him on Friday night, of course, and pick him up so he
could come home for the weekend. One Friday I called and
said, “Jeffrey, are you coming home for the weekend?
What time do you want me to pick you up?” and he
just said, “No.” So I said, “Oh, okay, do
you want me to pick you up for church?” and there
was this little pause, and he said, “Well, no.”
So then I said, “Well, gosh, can we, like, do lunch
or something? I am getting a little upset here,” and
there was this long pause. Jeffrey knew I was upset, so
there was this pause, and then he said, “No, Mom, a
new staff person is coming in and I've got to train
him.” At first I was alarmed, thinking, “My
gosh, he does not even want to come home anymore.”
But I hung up the phone and I thought about it and
realized that Jeffrey was not telling me that I could not
come to visit him. He was just telling me that his house
was his home and he was comfortable. That made me feel
good because it made me realize that as a mom and as
parents, we had done what we were supposed to do.
We made Jeffrey feel comfortable about living an
independent life. But I also realized that an awful lot
of professionals in Jeffrey's life have made it possible
for Jeffrey to live the “enviable” independent
life that he lives.
That is the goal for all of us: to just make sure that
an individual can be the very best “Jeffrey”
that he can be.
Jordan Knab: That is a lot. Thank
you, Linda. It looks like we have a little under fifteen
minutes left for any questions from the audience. Please
give your name, title, and any affiliations you might
have.
Romie Topin (Colorado): My name is
Romie Topin. I am from the Colorado Department of
Education. I have worked in the area of working with
families and as a transition specialist. I am also a
parent of a young man who is twenty-five with downs
syndrome. My question was regarding the research that Amy
discussed. Amy, are you publishing an article about that?
Amy Pleet: Well, I just defended
three weeks ago, so, I do not know when and where that
will be published yet, but I will.
Romie Topin (Colorado): It is great
research and I am really interested in it.
Amy Pleet: Thanks.
Jordan Knab: Other questions?
Tonya Patten (Illinois): This is
Tonya Patten in the State of Illinois Board of Education.
What is the title of Amy's research?
Amy Pleet: The Relationship Between
Promoting Parent Involvement and Students' Post-school
Outcomes, and someplace in there I will put something
about students with disabilities. Perhaps Post-school
Outcomes for Students with Disabilities, or something
like that. I am not sure what the published title will be
at this point.
Tonya Patten (Illinois): Okay,
thanks.
Jordan Knab: Any other questions?
Edward (Texas): I guess this is an
observation. This is Edward from the Arc of Texas and the
Rio Grand Valley in Texas, and I am the transition
coordinator here. The socioeconomic makeup of our
families is far different from the wonderful successes
that Sue and Linda and other like parents have had. In
your work and even in your research, Amy, going back to
you, have you uncovered any particular strategies that
help deal or advise and work with families who just do
not have the background in terms of dealing with agencies
and even coming to meetings and the whole outreach
concept?
Amy Pleet: Yes. The research that
Joyce Epstein coordinated at Johns Hopkins which I
mentioned involved three hundred researchers over the
last thirty years around the world. What they found was
socioeconomic, racial, and regional background seemed to
have less impact on student performance than the fact
that the school took on a concerted effort to build in
family involvement and a partnership. If you had all
things equal and schools did not build partnerships, then
you would see the kind of differences that you are
talking about.
But every school involvement practice needs to be
tailor-made to the particular population where you
include parents in the planning: “What will it take
for us to be designing something that works for parents
like you?” What the research showed is that if you
tailor the design and build in all six of the Epstein
types or all six of the national PTA standards, then the
background does not make a difference.
I taught a graduate course at Johns Hopkins this past
fall with transition specialists and special educators
from the region, and they each had to do a project with a
family that they would consider not connected with the
school. They were very surprised at the results when they
started being creative and working with that family and
setting aside the assumption that this family is
unreachable. You set that assumption aside and then you
can say, “What would it take to build a partnership
with this family?” When you start looking at what it
would take and you start rolling up your sleeves and
working with the family to discover the answers, there
are all kinds of possibilities.
Suzanne Ripley: I wanted to add
something to that as well. I live in an area that has a
lot of supports, as well as people from a wide variety of
backgrounds who, in different ways, do or don't access
those supports. [One result of] families becoming more
involved in helping their child is that the agencies that
were overburdened wind up having more time to work with
those families who can't perhaps go out and do the job
development on their own. Essentially, it cuts down on
the waiting list.
The other thing that happens is that more and more
employers are now hiring folks with disabilities. That is
not just because they had a young person there who has a
disability but because friends of theirs or another
business hired somebody. Let me give you an example.
When Joe worked at the grocery store, it celebrated
its first-year anniversary. They had the local paper do a
little story on the first-year anniversary of this
grocery store, and the person whose picture appeared on
that article was Joe. The person writing the article, who
I never met — I had nothing to do with this —
said that everybody knows Joe when you come to Bread and
Circus. Suddenly, it was almost a reason to shop there,
and other stores were wanting to say, “Yeah, we have
got one of them too.”
So, with one or two successes or one or two very
obvious kids with disabilities out in the community, the
road was opened to many other kids, to many other
possibilities, and to families who began to think that
they too could do this. So, it is not just a case of, if
you are capable of working the system, if you can write a
really convincing letter, if you have these skills, your
kid can be employed. That may be true, but that is only
how it starts. What happens next is entirely different
and grows very quickly.
Linda McKelvy Chik: As we have gone
around the state and done training with the Next Step
Series, we found that the planning guide is an
opportunity for parents, service providers, and students
to sit down and talk openly about the young person's
hopes and dreams. We found that many parents have never
dared to ask those kinds of questions. It opens up some
real dialog between the parent, the child, and that
service provider to work towards meeting those goals
together. Even very limited parents feel like at least we
can do something to help move this process forward.
So, I would encourage you to look at that planning
guide. Other Next Steps workshops are also listed on the
Internet at http://www.peatc.org.
Amy Pleet: We use them in Maryland
also.
I want to say one other barrier to parent involvement,
and that comes from my personal experience. I am also a
parent of a son who is sixteen with a disability. During
the years that I spent as a transition specialist out in
high schools, I would sit at the IEP table and people
would seek my opinion on what to do with a student, what
kind of resources existed, and so on. When I came to that
same table with the same professionals that I knew on a
first-name basis, only this time as a Mom, they told me
— and I am not exaggerating — “If you
would like to say a few words before we start about what
you are interested in and your concerns, then I think
that you could do that while we are waiting for the rest
of the people to come. So why don't you go ahead and talk
and then we will start the IEP meeting?”
I could not believe these were the same people who
respected my opinion, who thought that I was an equal
partner, as a professional. What it revealed to me is the
mindset that educators have that they are the experts and
that parents are the uninformed. When I think back on all
of my education, it is not until very recently that I
really noticed this gap. There was nothing in my training
as a special educator that had helped me to see this
paradigm of us as the experts and parents as the
outsiders. The parents are the ones that have known these
youngsters all the way through. We must not forget to
train professionals on how to reach out to families.
The PEATC Next Step Series is wonderful. We do those
in Maryland. What we are starting to see is we are
getting a whole cadre of very informed families who are
going to the schools and — I won't say that this is
true everywhere — there are a lot of places where
the professionals are not ready to meet them half way and
to build partnerships, where the professionals still hold
this kind of stuffy “we are the experts” point
of view. What happens is parents get angry and we have
had a huge increase in lawsuits. I think that can happen
across the country where you have parents informed but
schools not ready to build partnerships.
So, there are implications for teacher training, both
pre-service and in-service, to make sure that the special
or general educators who come into the schools are ready
to build partnerships with families. You have just heard
from both Linda and Suzanne what a great resource that
families are.
If we are not ready to build a partnership with them,
we are missing a very valuable resource.
Jordan Knab: I would like to thank
today's speakers and audience participants for taking
their time to contribute to this discussion on a very
important topic.
I have a few short notes: the NTA is sponsoring a series of topical
resource bulletins this spring and summer. The June resource bulletin
will be on today's topic of partnering with parents.
If anyone in the audience is not on the NTA mailing list,
please call 202-884-8181 and we will be happy to add you
to our list.
Thank you all again for your participation.
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