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In the United States today,
the concept of diversity is widely embraced. Diversity, as the word is
most often used, means that people of all races and ethnic groups, abilities
and disabilities live and work together in a way that celebrates their
differences while emphasizing their similarities.
We are a diverse country.
We have laws that promote diversity. Over the last three decades, we have
made major strides in employment and educational equity for people of color.
We have passed laws and regulations in every state to address previous
inequities for racial and ethnic minorities. And, in the past two decades,
first with education and employment legislation in the 70's and then, more
recently, with the stricter access requirements of the Americans with Disabilities
Act, people with disabilities have achieved a voice. It is a voice that
has argued for the right to participate in the lives of their communities
as any citizen may. It is a voice that has said count me in, don't count
me out. As a result of this strong self-advocacy, today, we are beginning
to count people with disabilities among the groups that should be included
the mainstream of society for it to be appropriately diverse.
It is this diversity movement
that has been both the impetus and the support for the movement of children
and adults with disabilities from institutions into the real world. American
society is more accepting of differences now than ever before in our history.
Because of that, those of us working in the field of special education
have taken full advantage of every opportunity to move students into settings
more like the world they will face as adults. At The Connecticut Institute
for the Blind/Oak Hill, a residential private school for over 100 years,
that move has meant a significant challenge.
We were challenged to maintain
the residential services that families and school districts sought for
the students they sent us who have severe multiple disabilities. We wanted
to respond to the need for more suitable community inclusion without sacrificing
the gains that we all have seen in children who have the consistency of
program 24 hours a day. We wanted to maintain the high standards of education
that Oak Hill had built its reputation around. And, we wanted to do the
right thing for children.
We have found what I believe
to be the solution. The Oak Hill School program combines the best of both
the residential school and the community-based program and has, indeed,
done the right thing for children. It has not, however, been without difficulties
in adjustments for students and staff alike.
Today, the Oak Hill School
program is totally decentralized. Rather than a single campus with classrooms
and living facilities in one location, we have students living in small
(5 to 6 person) group homes in communities spread around our small state.
Most of our students attend classes that we staff and operate in public
school buildings in or near the towns in which the group homes are located.
Others of our classes, those for older students, are located in shopping
areas or small industrial parks near to jobs and the comings and goings
of other people at work. In all instances, students are a part of their
school and home communities.
To be more specific, let's
look at a day in the lives of two of our students. They were each chosen
to be representative of the other students and can provide a clear picture
of the range and types of programs offered.
First, let me introduce
Mark. Mark is eleven years old. He has lived at home until last year when
the severity of his cerebral palsy, mental retardation, and other very
complicated health disabilities began to overwhelm his family. They looked
around for a school near their home where regular visits would be possible.
They also wanted Mark to have the opportunity to know other children who
do not have disabilities. Oak Hill School became the obvious choice.
Mark now lives in a nearby
town in a small group home with four other children who also have serious
medical disabilities. Our group homes are in residential neighborhoods
across Connecticut and are so much a part of the neighborhoods that, unless
people are specifically told, they are unable to pick our home out from
others on the street. Mark's new home is well furnished. Each child has
his or her own bedroom and the common areas are set up to accommodate the
wheelchairs and special adaptive devices necessary while still maintaining
a real homey look.
The staff at Mark's house
are all thoroughly trained by Oak Hill before they ever are allowed to
care for a child. We have a rigorous one week pre-service orientation training
program for all new employees and then annual updating of skills in all
areas for all direct care staff. Because of the special medical needs in
this particular home, one of the staff members must be a nurse. The other
staff, and the group home manager, do not have medical backgrounds, but
are experienced in working with children whose health is as fragile as
Mark's.
In this home, as in all
our homes, the students are asked and expected to do as much for themselves
as is within their capabilities. We educate for independence at whatever
level that is possible. So, the morning routine at Mark's house looks very
much like the morning routine at your house, or mine. The awake staff member
(a licensed practical nurse) who comes on duty at 11:00 p.m. stays until
9:00 a.m. to be extra hands in assisting with wake-ups, showers, dressing
and breakfast. Then it's off to school.
Mark and his house-mates
are transported by Oak Hill staff in a specialized van equipped to carry
all five wheelchairs. School, about five miles away, is a middle school
for that community and is populated by a highly diverse student body of
seventh and eighth graders. The Oak Hill classroom was designed for our
purposes by our own staff through an interesting arrangement negotiated
with the school district.
In our search to accommodate
Oak Hill students in educational environments with nondisabled peers, we
approached this district to inquire about leasing classroom space. There
was none available, but they did have an unfinished space in the lower,
arts level of the middle school building that we could use. We agreed to
finish the space using our materials and labor in return for a five year
payment-free lease with a renewable option after the five years. The space
is wonderful, replete with built-ins and ample space for wheelchairs and
the myriad specialized (and always bulky) equipment needed for students
who have multiple disabilities.
The classroom is staffed
with a certified special education teacher, two aides, one licensed practical
nurse and a phalanx of therapists who come in and out to meet the students'
programs. While the classroom instruction and format may look familiar
to many who work with this population of students, there is an interesting
addition. We have the benefit of student help from the middle school program.
During the course of the day, the classroom is visited by at least ten
seventh and eighth graders who have been assigned to our class by their
teachers. Some come to work on their own homework sitting near one of their
Oak Hill friends like Mark, some come to work on the computer with a buddy
from our class and still others come to play educational games and to be
helpers.
We are told that many of
the middle school teachers use participation in our program as rewards
for good behavior. However it works, it's working. Our students have benefited
from their interactions with these students. Their behaviors show longer
periods of sustained attention to task, more frequent and longer eye contact,
more attempts at communication and generally happier affect when they are
involved with their friends. The middle schoolers are, in turn, learning
about themselves and others in a totally new context. They find it "cool"
to be in our classroom. Many have never had any contact whatsoever with
anyone with a disability, and have found it to be interesting – as in "if
Amy is blind, how does she know when I'm here?"—challenging—as in "how
can I make Steve stop trying to bite me?"—and gratifying—as in "I can tell
that Carlos likes me because he smiles whenever he hears my voice". One
very real measure of benefit is demonstrated by the fact that the middle
school students continue to make their classroom visits during their school
holidays while we're still in session.
Mark spends six hours each
day in school. His instruction is delivered according to his individualized
education program, a mandated document drawn up for him by a team that
includes educators, therapists, his parents, and his residential manager.
The communication between home and school keeps the program consistent.
Because so much of what is taught are daily living skills, they must be
practiced and applied across all settings. Everyone who works with Mark
is informed about his program, his progress and his next steps.
After school, Mark can take
it easy for a bit, but not for long. Recreational activities are planned
for further community integration. Walks in the park, visits to playgrounds,
shopping at the mall, and going to the local recreation center take up
much of the time between school and dinner. And, from then on, life at
the group home looks like life at our homes again, with TV and stories
and quiet games and showers and bedtime.
Mark's family, and the families
of the other students in the house, visit frequently. Their presence creates
the feeling of an extended family for all and ensures that there's always
a supply of home-baked cookies around. Parents take their children home
for short visits, but we have found that, with students who have serious
medical needs, they are most comfortable visiting in the group home where
staff assistance is immediately available.
Now, let me tell you about
Rita. Rita's situation is only somewhat different from Mark's. Rita is
about Mark's age, but her multiple disabilities do not include compromised
health. Rita is considered to be deaf-blind. She has a fairly sophisticated
sign language vocabulary, is turning into a computer whiz and has amazed
her nondisabled peers with her artistic abilities.
Rita also lives in an Oak
Hill group home with five other children. Her home and the activities there
are just as structured as those at Mark's house with highly trained staff
on duty at all times, however, a nurse is on call rather than on duty.
Rita's house-mates do not have the degree of medical involvement as Mark's
and they tend to have somewhat more cognitive ability.
Rita attends class in a
public school in a town about fifteen miles from her home. Her classroom
is located in an elementary school in which students are as old as ten
years. Some of Rita's classmates are somewhat older than the students at
the school, initially giving us some cause for concern. It needn't have.
Because of the developmental delays, most of our students were smaller
in stature than would befit their early adolescence. To have placed their
classroom in the only other available space, i.e. at the high school, could
easily have turned our children from people to mascots, from peers to children
seen as much younger and therefore in need of "care" rather than friendship.
Rita and her classmates
benefit from interactions with the other students in many more ways than
is possible for Mark in his more medically controlled setting. During the
day, nearly twenty students come into the class to work on special projects
with Oak Hill students. The partners are assigned by our teacher working
closely with the other teachers to create the best matches and projects.
Additionally, our students are taken to the playground by buddies. They
participate with friends from other classrooms for visits to the school
library. They eat their lunches in the school cafeteria. Some, like Rita,
go into other classrooms to take part in subjects like art and, in return,
some of the students not enrolled in our program come into our classroom
for short periods of specialized instruction. We conduct regular sign language
classes for students and their teachers and have been very pleased with
the interest and the turnout.
Our community school experiences
speak volumes about the professionalism and caring of educators. All this
interaction is voluntary on the part of the receiving school; all we do
is lease the classroom space. The resourceful staff of Oak Hill and the
welcoming arms of the school community have brought about the rest. The
inclusion effort is so successful that the relationships formed during
the school day have now become extended to after-school activities as well.
We invite friends to our home to play, for holiday parties and just to
hang out. It is exciting to know that that is reciprocated from time to
time. Rita recently attended a friend's birthday party. Her parents were
thrilled.
Aside from the social benefits
that we believe are obvious, we see a marked difference in our students'
behaviors. They appear to use their friends as role models. They seek more
direct interaction with other students than with staff, and they are less
likely to act out. For their friends, we are told that self-images are
enhanced, that peer interactions are more positive and that their patience
and self restraint are enhanced.
Rita's instruction also
is based on an individualized education program. It is carried out, as
is Mark's, in all aspects of her educational day. For a residential student,
that translates into about 14 to 15 waking hours. No small task.
Mark and Rita are just two
of the twenty-three students who attend Oak Hill School. Our sponsoring
agency, The Connecticut Institute for the Blind, operates 69 group homes
and has day and residential programs in over 40 Connecticut towns, serving
nearly 400 individuals with disabilities. The School is a small part of
what we do, but is our roots and continues as a very important program.
It formed the basis for a fully developed, decentralized program of community-based
services for children and adults with disabilities. No longer do we run
programs "on the hill behind the fence". Our classes and other programs
are in the world. Our program participants benefit from the interactions
they have daily with people in that real world. They also have the benefit
of the structured support that is most readily available in a residential
program. We have, I believe, created the best of both worlds and have the
smiles to prove it.