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MARK YOUR CALENDERS: VOR's 2006 Annual Meeting will be Saturday, June
10
in Washington, D.C. The Washington Initiative will begin with a briefing on
Sunday, June 11. A complete agenda for the entire event, including a Friday
Board Meeting and State Reports, will be sent out shortly. Please plan to
join us!!!
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VERY EASY WAY TO BENEFIT VOR. When you search for information on the
Internet, use
http://www.goodsearch.com, a division of Yahoo! Just choose
"Voice of the Retarded (Rolling Mdws., IL) from the "I'm supporting" field
and revenue will be generated for VOR when you conduct your search. It is
really that easy. Thanks for your help!
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VOR Weekly E-Mail Update
January 6, 2006
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UPDATE ON MEDICAID AND FEDERAL BUDGET RECONCILIATION
1. Key contacts remain key: If you are a constituent and/or can reach
constituents, calls and faxes needed TODAY!
FOCUS ON SPECIAL EDUCATION
2. Don't Take Sides on Inclusion (reprint)
3. Eli's Choice
4. THANKS TO ALL WHO SUPPORTED VOR IN 2005!
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1. Key contacts remain key: If you are a constituent and/or can reach
constituents, calls and faxes needed TODAY!
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In the last VOR Weekly E-Mail Update (http://www.vor.net/current),
we
provided an update on a Federal Medicaid Budget development just before
Christmas. As we explained, the House must vote on the budget again. The
first vote resulted in the bill passing by just 6 votes. There were 16
Representatives that were not present for the first vote. These
Representatives are our targets - we are urging them strongly to VOTE NO.
If you have contacts in these offices, call them today. Time is of the
essence.
Baca (D-CA)
Davis, Jo Ann (R-VA)
Emanuel (D-IL)
Gutierrez (D-IL)
Harmon (D-CA)
Hostettler (R-IN)
Hyde (R-IL)
Istook (R-OK)
Johnson, Sam (R-TX)
Jones (R-NC)
Kolbe (R-AZ)
Miller, Gary (R-CA)
Myrick (R-NC)
Radanovich (R-CA)
Reyes (D-TX)
Roybal-Allard (D-CA)
THANK YOU!!!!
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2. Don't Take Sides on Inclusion (reprint)
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Summary: Shortly after the release of this remarkable article in September
2003, VOR shared it with you in the weekly update. Because it relates so
closely the next article in this update, it seemed worth reprinting. Both
"Don't Take Sides on Inclusion" and "Eli's Choice" make the point that
one's "community" of friends and services is not always in what is referred
to as the mainstream. For Dustin and Eli, their educational happiness and
services - their educational "community" - was decidedly outside the
mainstream. The bottom line in all of this is CHOICE based on needs and
wants. One size does not fit all.
By Marcie Roth
The Ragged Edge
September 2003
I have been fighting for children with disabilities to be able to receive a
free appropriate public education since before PL 94-142 -- now called the
Individuals with Disabilities Education Act, or IDEA -- was passed, back in
1975. I have represented hundreds of families as they fought to get their
children that free appropriate public education in their neighborhood
school, in the classroom the child would have attended if they didn't have
a disability.
I have been active in the leadership of national organizations fighting for
inclusion. I've provided training and technical assistance to states,
communities, school districts and schools on exactly how to include
students with disabilities in general ed.
Funded by U. S. and the state department of education, I spent three years
in classrooms across my state, showing school teams how to include
students. I've been widely published on the topic of inclusion, and have
developed a number of tools that are in use today in general ed classrooms.
I can honestly say I've never met a child who can't successfully be
included, under the "right" circumstances, no matter what.
Yet last spring I put my 11-year-old son Dustin on a short bus and sent him
to a segregated school in another county at a cost of $50,000-plus per year
to the taxpayers of my community.
Shocking? You can only imagine.
I have been battling with our school system for four years to get Dustin
the educational supports and services he needs -- and is legally entitled
to -- without success. Despite intervention from the Maryland State
Department of Education, the U. S. Department of Education, Congress, the
White House, and even a superbly honest article by reporter Jay Mathews
that ran in the Feb. 6 Washington Post, Dustin's Individualized Education
Plan -- his "IEP" -- was never implemented. Not for one day.
This is not just my view of things, but the actual "Findings" from the
Maryland State Department of Education. (I have four such "Letters of
Findings.") No behavior support plan, no keyboarding, no extra set of books
for home, inadequate testing, outright lies. And then there was the abuse,
also honestly portrayed in the Washington Post.
Despite it all, rather than implement Dustin's IEP, as required by law, my
school system decided they "couldn't" serve him. They wanted him placed in
a segregated school, in another county.
I was fortunate, though. Because of our high profile (and the Washington
Post article), I was able to reject the hellholes they tried to send Dustin
to (where 4-point restraint and timeout rooms are still in use), and
managed to get him into a truly wonderful school, as segregated schools go.
In less than two weeks, my previously devastated child began to blossom. I
have never seen him as proud as he was when he signed his name to a gift
for his grandparents. He looked at me, beaming, and said "Look what the OT
taught me to do!" Dustin was supposed to have received occupational therapy
services as far back as 1998, but it took until now for it to actually
happen.
I bet you're wondering why I didn't take legal action to force
implementation of the IEP. I tried. I did as much as I could. A few
wonderful people stepped up to help me, but I was unable to afford the
legal battle I needed to fight, and I was well aware that even with
adequate resources to spend on a lawsuit ($50,000 or more), I was likely to
lose anyway. There are very few legal resources for people like me. Just
last year, I spent $8,000 out of pocket, paying expenses for professional
experts to attend meetings -- professionals I would have needed to use as
expert witnesses in a hearing had I pursued a lawsuit. This was in addition
to the $14,000 I spent out of pocket on copays for healthcare, after my
really decent health insurance paid its portion.
While I was struggling to pay experts to attend meeting after meeting, as I
fought for my child's right to an education, my school system was paying
lawyers $650 an hour or more to fight parents like me. Where did they get
that money to spend? Taxpayer dollars, of course! they used my taxpayer
dollars -- yours, too -- against my child.
Dustin's neighborhood school should be able to include him. But they have
proven that they have neither the will nor the way to do it. I am a staunch
inclusionist who now says: you're wasting your breath on that argument.
My new friends -- parents of kids in segregated schools -- will fight to
the death to keep these segregated schools -- until we can be guaranteed
that "inclusion" will not hurt our children.
I am far more aware than most that it really is possible to get inclusion
right. I'm also far more aware than most of just how wrong "inclusion" is
when it's not right.
My child will no longer pay a price for my ideology. He's paying a
different price right now -- the price of being segregated from his
nondisabled peers. I get to live with the guilt of allowing this.
Supporting it, even.
If you want to be part of the solution, don't take sides on inclusion. Put
your energy toward demanding full implementation and enforcement of IDEA.
Until our children are assured that the law will really be implemented and
enforced, the rest of the debate is irrelevant.
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3. Eli's Choice
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Summary; His parents fought for boy with Down syndrome to be in the
mainstream. As a teenager, he just wanted to be with his friends.
By Amy Dockser Marcus
The Wall Street Journal
December 31, 2005
BETHESDA, Md. -- For years, Eli Lewis was the only student in his class
with Down syndrome.
The genetic condition, which causes a range of cognitive and physical
impairments, made it harder for him to do his school work. But his parents
felt strongly that he could succeed. They hired a reading tutor. An aide
worked with his teachers to modify tests and lessons so that he could be in
the same classroom as everyone else. He participated in his middle school's
award-winning chorus and was treated as a valued member.
But when all the other kids in his class were making plans to go to the
local high school this fall, Eli, 14 years old, said he didn't want to go.
He wanted to be in a small class with other students like him. "I don't
want to get lost in a big crowd," Eli says.
Eli's declaration surprised his parents. Then his mother recalled the many
times she stopped by the school to check on her son, only to find him
eating by himself. Once, when she came to pick him up from a dinner that
chorus members attended, she says she found Eli sitting with his aide,
while the other students sat at a different table.
"The kids liked him, they knew him, they spoke to him," says his mother,
Mary Ann Dawedeit.
"They just didn't think of him as a peer." Eli, she says, was tired of
"being the only kid who was different."
Federal law mandated in the 1970s that children with disabilities be
offered a "free and appropriate public education" in the "least restrictive
environment," rather than being separated only in special schools or
institutions. Over the years, advocacy and additional laws resulted in
efforts to get children with disabilities placed in regular classrooms,
with proper support, whenever possible. The process, called "inclusion" or
"mainstreaming," has largely been an academic success.
Studies have shown benefits for all children, not only those with
disabilities, who study together.
Many researchers argue this is one reason why people with Down syndrome
have made such remarkable progress in recent decades. People with Down
syndrome who learn in regular classrooms do much better academically,
research has found. They also have significantly higher rates of employment
after they graduate and earn more money than peers who studied mainly in
self-contained classes.
And yet, Eli Lewis's experience poses a difficult dilemma, one that is only
now starting to be recognized and addressed. With help, he had succeeded
academically in a regular classroom. But he felt isolated. In a book to be
published next year, researchers at the Center for Social Development and
Education at the University of Massachusetts in Boston say that although
people with intellectual disabilities made enormous gains academically due
to inclusion, their social integration at school "remains stagnant."
In a survey of 5,600 seventh- and eighth-grade students from 70 schools
across the country, more than half of the youths said they were willing to
interact with students with intellectual disabilities at school. But only
one-third said they would be willing to invite such students to their house
or go to the movies with them, according to the survey done by the
University of Massachusetts center and the Washington-based opinion firm,
ORC Macro. "Student attitudes continue to remain the most formidable
barrier to inclusion," the researchers concluded.
At first, Ms. Dawedeit and her husband, Howard Lewis, thought Eli might
change his mind. The couple -- who have two other sons who don't have Down
syndrome -- felt there were many advantages to Eli staying in a regular
classroom, including greater independence and more interaction with the
general student body. But eventually, Mr. Lewis says he began to recognize
that having Eli in a regular classroom might not be "as important to Eli as
it is to me."
Ms. Dawedeit remained reluctant. She talked with a friend who had a son
with Down syndrome, who was also learning in a regular classroom. "I felt
like I had let her down," Ms. Dawedeit says.
"I had preached a mantra for so long to so many."
In May, at the science exposition at Eli's middle school, her feelings
changed. The eighth-graders took over the school hallway and parents were
invited to visit. Some students demonstrated elaborate experiments they had
been working on. Eli worked with his aide to do research online about the
chemical properties of silver. He learned where to find it on the periodic
table. For the exposition, he printed out some of the documents he had
found.
When his mother came to see his project, Eli again raised the subject of
where he was going to high school. For Ms. Dawedeit, the contrast was
sharp. Here was Eli, successfully participating in a science exposition
with peers who didn't have disabilities -- but still talking about wanting
to be with other people with Down syndrome.
She says she realized she needed to try to accommodate her son's desire for
a social group. "I really had to step back from my personal beliefs," she
says.
In the fall, Eli enrolled in the ninth grade at Bethesda's Walter Johnson
High School, a sprawling building of over 2,000 students. He is in a
special program with 20 other students who have disabilities, including one
who gets around in a wheelchair and has difficulty talking. Six of the
students in the class have Down syndrome. Eli already knew some of the kids
from various extracurricular activities, such as drama class and Special
Olympics, where he participated in soccer, basketball, swimming and
bowling.
Getting out of the mainstream has meant trade-offs. His school is about 10
miles from Eli's house, farther than the local high school that his older
brother attends. (The local high school doesn't have a separate
special-education program.) A special-education bus now comes each day to
pick up Eli, along with other students with disabilities.
"This was one of our big compromises," says his mother. In middle school,
Eli walked to a bus stop and rode a regular school bus. "Other kids knew
him," says Ms. Dawedeit. "Now he's a special-ed kid on a bus."
One evening in November, after a dinner of chicken burritos and salad, Eli
helped his brothers, ages 12 and 17, clear the dishes. Then his parents
watched him, as he started making his way through his homework -- a
worksheet to practice using nouns and verbs. Since Eli was born, they had
fought to have him included in regular classrooms. Now it sometimes felt as
if Eli might end up outside the world they had tried so hard to keep him
in.
All along, they shared a similar goal: for their son to be able to live
independently. But Mr. Lewis, a lawyer, began to worry that the academic
gap between Eli and other classmates was getting wider in the regular
classroom as he grew older, and might be too difficult to bridge in high
school. "I'm not married to inclusion at the expense of Eli's getting the
skills he needs," he says.
Ms. Dawedeit, a manager at a retail store, was less certain. She knew how
much Eli, like all kids his age, wanted to belong. But without spending
significant amounts of time in regular classrooms, how would he ever learn
the skills he needed to reach the goal of living on his own?
"The truth is he has to go out and get a job," she says. "If he's educated
with his regular peers, then maybe a regular peer will hire him."
Eli finished his English worksheet, and got up to take a break. He came
over and gave his father a hug. "Are you meeting any new kids at school,
Eli?" his dad asked. "Not just yet, Dad," Eli answered. "Why are you
hanging out only with the kids in your class?" his father queried.
"Because I know them," Eli answered, and went into the kitchen to get some
cookies.
At his new school, the Parent Teacher Student Association has put the issue
of how to promote the inclusion of students with disabilities in
extra-curricular activities on the agenda for its January meeting. A
student group that pairs students with disabilities with a buddy without
disabilities has already scheduled several activities for the coming
months, including ice skating and bowling.
Still, for most of his school day, Eli is now in a separate classroom from
the general school population. Last month, ninth-graders in the
general-education classes were reading the novel,
"To Kill a Mockingbird." In the special-education classroom, the teacher
was going over worksheets that had been adapted from the book, with some
related questions.
Eli was signed up for a regular physical-education class, but asked his
parents if he could switch to one with only special-education students. His
mother was reluctant to change, because it was one of his only chances to
meet kids in the general-student population. She offered a compromise: He
could switch to the special-education gym class with his friends, if next
semester he took weight-training as part of the regular class. Eli agreed.
Janan Slough, the assistant principal who oversees the special-education
department at Eli's school, says the school has difficulty finding
certified special-education teachers because of a national shortage.
The school tries to foster as many opportunities as possible for those with
disabilities to be in general classrooms, she says. Still, she adds, "I
feel caught" between juggling the need for socializing with the need to
teach basic, crucial tasks, such as handling money. On one field trip, the
special-education kids went to a grocery store; they were supposed buy
something their family might use at home, pay for it, and make sure they
got correct change.
Most of the kids with disabilities need to focus on independent-living and
job skills, rather than college preparation. "I'm charged with thinking
about where they are going to be at 21," she says.
"I don't want parents to come back and say, 'It's nice they were socially
included and had parallel instruction, but you didn't prepare them for the
world of work.'"
For now, Eli has only one class -- ceramics -- that he attends with the
general school population. On a recent morning, Eli sat next to a boy
assigned to help him. The students were designing tiles, and from time to
time his peer assistant would look at what he was doing, or go with him to
get more clay. For much of the class, the boy bantered with one of his
friends, who had pulled up a chair next to him and was regaling him with a
story. From time to time, Eli made a joke and the boys all laughed
together.
But when they walked Eli back to the special-education classroom, there was
no suggestion that they meet up again that day. When Eli was asked if he
enjoyed spending time with his assigned partner, he shrugged and said,
"It's OK."
Eli has a lot of ideas about what he wants to do after high school. In
middle school, he took a media class and worked in the school's TV studio.
Along with the other kids in the class, he was given a homework assignment
to make a public-service announcement. Eli made one about the Special
Olympics. "I want to be a director," he said, when asked about his plans
after high school.
"Eli has serious career aspirations for himself that may not have anything
to do with what the rest of the world sees for him after high school," said
his mother, one afternoon last month, while waiting for him at a drama
class he takes outside of school. The class, made up of students with and
without disabilities, was planning a variety show, and Eli was excited
about performing.
Every night, he went to his room to work on a dance routine he had created
to accompany a song from the soundtrack of the movie, "Holes."
His girlfriend, whom he met in elementary school and also has Down
syndrome, had invited him to be her date to the upcoming Winter Ball at her
private school. Next month, Eli will turn 15 and is planning a big party.
The only kids he plans to invite also have disabilities, his mother says.
While she's glad he has found a social circle, she still wonders about what
he's missing by going to special-education classes instead of staying in
regular classes. "I go back and forth on it all the time," she says. For
instance, his school has a state-of-the-art TV studio with editing
facilities and a control room, where a class is given. Eli's parents wanted
him to be in that class, but it's not possible right now, because he needs
to attend the special-education math class, which is held during the same
period.
On a recent morning at school, Eli weaved around the teenagers lining the
hallway. Some sprawled on the floor, catching up on homework. Others joked
with each other by their lockers, or rushed to get to their next class. Eli
didn't talk to any of the students. He walked with purpose, heading to the
special-education room.
When he got there, his face brightened when he saw one of his friends.
"This is my best friend," he said, throwing his arm around the other boy,
who also has Down syndrome. He pressed his face close to his friend's until
their cheeks almost touched. Eli smiled. "What table are you sitting at
lunch today?" he said as they walked together down the hall. "Come on, make
sure you sit with me."
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Tamie Hopp
Executive Director
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