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OFFICE OF HANDICAPPED CONCERNS
WILL'S CORNER, OKLAHOMA
(Serving the Disability Community of Oklahoma)
Volume 8, Issue 2
April, 2007
Share4Life
This was the title of the article on page two of the premier
edition of Will’s Corner, Oklahoma written way back in May of
2000. I remember going down to Purcell, Oklahoma to interview
Linda Durbin, and that early article had a nice picture of Linda
at her work station where she refurbishes donated computers to
give to people with disabilities all over Oklahoma.
One of the callout boxes in that article informed that the
AMBUCS Share4Life Komputers (ASK) of the civic organization
Sooner AMBUCS in Norman had placed 550 computers in homes of
people with disabilities. It was an exciting day and a learning
experience for a new Disability Program Specialist who still
knew very little of the resources in Oklahoma to assist people
with disabilities in meeting their needs.
So where are we going with this? I met Adri-Anne Trammell again
at a recent meeting and asked her how things were going. Sooner
AMBUCS seems to be making some big strides forward, and I wanted
to let you know about what’s going on down there.
AMBUCS is a civic organization with 135 clubs nationwide and
about 35 in the Oklahoma/Kansas region. AMBUCS has chosen to
work projects involving people with disabilities. I learned when
gathering information for this article that many of the chapters
build ramps for people with disabilities. They also provide
therapeutic tricycles and scholarships for individuals studying
to be physical, occupational, and speech and hearing
specialists.
The Norman chapter of AMBUCS has chosen to refurbish donated
computers and give them away to people with disabilities. Adri-Anne
Trammell tells me that currently they are the only AMBUCS
chapter doing this project although others have expressed
interest. Adri-Anne Trammell is the Project Manager of the ASK
Project for Sooner AMBUCS, and Linda Durbin does most of the
repair work on the donated computers.
As I said, there is a lot going on now at Sooner AMBUCS. On
Saturday February 24, I attended their open house at their new
5000 sq. foot offices in Norman. On October 8, 2006 they
received a $195,650 grant from the U.S. Department of Education
for the purpose of reutilizing assistive technology for people
with disabilities. Sooner AMBUCS was one of only ten
organizations in the United States to receive one of these
special grants.
On top of renting the new space, Sooner AMBUCS has bought an
18-foot box truck and employed some part-time employees to help
them at their new offices. This has been a big expansion for
this private, non-profit agency. Adri-Anne speaks glowingly of
the bathroom facilities which they have in their new offices.
That spoke volumes to me about what kind of office space they
had before. I don’t even want to ask.
Some of the computers which they refurbish come with access to
the Internet and some do not depending on the needs of the
person receiving the computer. Generally speaking, if you need
JAWS to read your computer screen or if you need voice
recognition software, you will need to purchase those programs
on your own. AMBUCS will provide a computer capable of running
that software.
Sooner AMBUCS refurbishes donated computers, but they will
accept models only so old. They proudly share that as of
Saturday February 24, 2007, they have given away 4500
refurbished computers to people with disabilities throughout the
state of Oklahoma!
Sooner AMBUCS Share4Life Komputers gives computers away to
people with disabilities. They do not, however, deliver the
computers. Adri-Anne explains that they like to give a
demonstration of the computer they are giving away and that they
prefer if the person with disabilities or their representative
can come to get a demonstration when they come to get their
computer.
The computers have been wonderful for adults and children with
disabilities. Many people have used their donated computer to
open up a home business. One man, a sculptor, stated his
intention of using the computer given him to sell his art work.
He was no longer able to work outside his home and wanted to
establish a home business. One woman who had been a quadriplegic
for 20 years states her intention of using her computer to
complete her education.
Many computers are equipped with software to help children learn
through a variety of educational games and programs. Children
with developmental disabilities frequently use donated computers
to teach them their colors, shapes, and telling time so these
children will be prepared to enter public school.
Right now there is a waiting list of 60 people to get a donated
computer. Adri-Anne states that this waiting list is about a
month for a low-end computer and three months for one of the
other models.
The new address of Sooner AMBUCS is 2012 Research Park Boulevard
in Norman. This is near where Flood intersects Rock Creek Road.
You may contact Adri-Anne Trammell at 405-360-1521 or Adri-Anne@cox.net.
Sooner AMBUCS website is www.soonerambucs.org.
Sooner AMBUCS is always looking for volunteers to help them
unload computers or pick up donated equipment. Of course they
are always looking for support from the business community in
the form of donated computers and financial support for the
project. Sooner AMBUCS is a 501 (c)(3) organization, and your
donations are tax deductible.
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...they have given away 4500 refurbished computers ...
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OHC web site:
www.ohc.state.ok.us
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Cancer Research
What if we could discover a particular substance produced by the
human body which occurs simultaneously with the spread of some
of the leading kinds of cancer? What if we could then find some
kind of chemical compound which would deactivate that particular
substance? Would this prevent or retard the spread of the
cancer? Maybe.
Dr. Thomas Pento at the Department of Pharmaceutical Sciences at
the O.U. Health Sciences Center in Oklahoma City is researching
just such a thing right now. He has located a substance more
easily referred to as KGF which is produced by the human body
naturally and appears to be connected with the spread of cancer
cells from their tumor of origin to other parts of the body.
Dr. Pento is hoping to locate a chemical compound which will
prevent the KGF from stimulating cancer growth in particular
kinds of cancer. KGF appears to be activated in the spread of
some of the leading kinds of cancer such as cancer of the
breast, the prostate, colon and lung. Dr. Pento is researching
40 chemical compounds with a comrade from Ohio State University
which have the potential to inhibit KGF.
He shows me a poster with the picture of three mice who have
been injected with cancer cells, and small tumors are clearly
visible beneath the skin. He shows me these same mice with their
tumors after receiving KGF. The tumors have quadrupled in size.
The thinking is that if KGF can be deactivated, cancer tumors
can be contained before they spread. Then they could be easily
removed by surgery.
KGF became a suspect in the cancer scene ten years ago. In 2001
an article published in a professional journal demonstrated that
KGF actually stimulated the movement of breast cancer cells. A
paper was published in 2006 further implicating KGF in the
spread of cancer cells of some of the leading kinds of the
disease.
If KGF could be “turned off” with some kind of drug, we would
have a new approach developed in the treatment of some kinds of
cancer. Today most of our chemotherapy to control the spread of
cancer is non specific. That is, the treatment is a shotgun
approach aimed at retarding the replication of any rapidly
dividing cells in the body.
The problem with this approach is that the chemotherapy kills
healthy cells in the body as well as cancerous cells. Hair
follicles are cells which divide rapidly in the body, and they
are not cancerous. That is the reason that people undergoing
chemotherapy experience the loss of their hair. The chemicals
affect all cells that divide rapidly whether they are healthy
cells or not.
If Dr. Pento could locate a compound to block the production of
KGF, this approach would specifically target cancer cells. That
is one major difference in this new approach. Dr. Pento explains
that some women have a genetic predisposition to develop breast
cancer. If a compound could be located to block the effects of
KGF, these women might take this as a preventative to make sure
they did not develop the disease. Intriguing.
All cancer cells are not the same. The cells are different and
attack different areas of the body. While KGF is present and
“turned on” in the spread of several of the most common kinds of
cancer, it is not “turned on” in all types of cancer. Dr. Pento
says, “We may cure cancer some day, but there will not be one
single bullet to cure cancer because there are so many kinds.”
The research currently being done at the Department of
Pharmaceutical Sciences may lead to better cancer drugs which
have strong possibilities for making it to market. The research
being done now uses animal models. Before pharmaceutical
companies act on the present research, human studies will
probably have to be done. Human studies can be conducted at a
cancer research center of which there are about 50 in the United
States. For about five years we have had a cancer research
center right here in Oklahoma City.
If everything went just right, we could actually have an
FDA-approved drug based on Dr. Pento’s initial research in ten
years. (That time frame presumes many things.) Most of us
welcome any kind of tool to fight this disease which is one of
the leading causes of death in the United States.
It is exciting that cancer research such as this is being done
right here in Oklahoma. Dr. Pento has received funds from the
National Institutes of Health, the U.S. Department of Defense,
the Presbyterian Health Foundation and the Oklahoma Center for
the Advancement of Science and Technology. He has also received
some funding from the American Cancer Society. Some of these
funding resources are based within our state.
Dr. Pento shares another line of research in addition to the
research on KGF. He tells me that the Human Genome Project was
completed in the year 2000 which has mapped out the 30,000 genes
present in the human body. Scientists have been able to map
these genes on a chart and locate those genes most affected when
particular types of cancer are present. Some day we may be able
to do “gene therapy” to reduce genetic predisposition to cancer.
These kinds of research appear to offer promise that we are
making progress in controlling this disease which has brought so
much suffering to our world.
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...this approach would specifically target cancer cells...
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Adoptions of OKDHS Custody Children
Today there are about 12,000 children in the custody of the
Oklahoma Department of Human Services. Some of those children
have special needs. All of those children are seeking adoptive
homes where they can experience love, nurture and an atmosphere
where they may develop their natural abilities to the maximum.
Karen Poteet is the Programs Manager of Adoption Assistance and
Post Adoptive Services for OKDHS. Her job is to help secure and
support safe and permanent adoptive families for children with
special needs which will fulfill each of their needs as well as
create a better social environment for all in our state. That’s
a tall order.
Fortunately she has been given some tools to work with. There
are incentives built into the system to encourage Oklahomans
which may have been thinking about adopting a child who is in
the custody of our state.
Children adopted through OKDHS will receive automatic medical
coverage through Oklahoma Medicaid. This insures that the child
being adopted can have health coverage which can be a big issue
for children who have special needs.
Children bring with them to their potential adoptive homes a
monthly stipend to assist families in the cost of raising
another child. OKDHS may also assist Oklahoma families adopting
children in custody by paying for certain one-time expenses such
as the legal costs of adoption itself.
Karen Poteet also shares that for a family or single individual
adopting a custody child over sixteen years and nine months old,
that child can receive a full tuition waiver at any Oklahoma
college or university. Karen explains that parents adopting
older children may not have saved for the higher education of
this child, and this brings a real incentive to invest in their
child’s future.
Today Oklahoma has over 9000 children which have been adopted
into over 5000 homes across the state. These figures compare
favorably with the 12,000 custody children, some of whom are
looking for adoptive homes.
One reason we are having a greater movement of children out of
foster care and into adoptive homes is the federal 1997 Adoption
and Safe Families Act. This law placed time frames on the length
of time a child can spend in foster care as well as provided
financial incentives for states to focus more attention on
adoption. This law has revolutionized the foster care system
nationwide by promoting adoption.
In 1999 Oklahoma created a whole unit in OKDHS called Swift
Adoptions to facilitate movement of children from foster care to
adoptive homes. Partly because of these efforts, Oklahoma has
placed more custody children in adoptive homes than any other
state in the nation per capita.
When you adopt a child in OKDHS custody, that is not the end of
the state’s involvement. Oklahoma recognizes that married
couples and single adoptive parents welcome support to help them
meet the needs of their new children. Twice a year OKDHS
sponsors retreats for adoptive parents to assist them in coming
up with good parenting solutions. Child care is furnished while
parents are on retreat.
OKDHS also provides a helpline to assist adoptive parents with
information and referral of services in their local area of the
state. In addition, adoptive parents may qualify for respite
care through the Oklahoma Respite Resource Network. These things
are all part of what are called post-adoption services for
families and singles who adopt through OKDHS.
When asked about her vision for the future for adoptions, Karen
says she would like to have a post-adoption worker in each of
the six OKDHS regions of the state so they could provide even
more hands-on assistance to couples and singles. Parents want
assistance in locating services for their adoptive children.
At the end of our interview, Karen Poteet tells me they also
provide assistance to adults who were adopted in Oklahoma to
locate siblings and birth parents. Most recently a sister was
reunited with two brothers after fifty-six years of living apart
across half a continent.
If you are interested in finding out more about adopting a child
in the custody of the Department of Human Services, call toll
free 877-657-9438. You may request some special publications
like Oklahoma Adoption Assistance Program (OKDHS pub. #91-26),
Swift Adoptions (OKDHS pub. #00-29) and Permanent Connections
(OKDHS pub. #13-18.)
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Oklahoma has placed more custody children in adoptive homes than
any other state in the nation per capita.
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State of Oklahoma web site:
www.ok.gov
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Raymond’s Room, a Book Review
Dale DiLeo, author of Raymond’s Room: Ending the Segregation of
People with Disabilities offers readers some condensed insights
into people with developmental disabilities which will challenge
them to put away their pre-conceived ideas and take a fresh
look. Mr. DiLeo takes off the blinders and brings his readers
intimately into his experiences with people with disabilities
over a long career. His understanding of and empathy with people
with disabilities breathes passion into his case for tearing
down attitudinal barriers which have in themselves limited
people with disabilities for generations.
Raymond’s Room was a real place well-hidden from public view
inside a residential facility for children with autism. This
room was not much larger than a walk-in closet and was used to
house children with “problem” behaviors. The stench from a room
locked from the outside with a portable toilet inside was
overwhelming. This room was referred to by staff as Raymond’s
Room because Raymond was the room’s most permanent resident.
From this backdrop and inside view of how we housed and cared
for people with disabilities in 1975, the author takes his
readers through the looking glass of time down to the present to
give us an historical perspective. We also look at the broad
picture of all aspects of life for people with disabilities
including home, work and play.
Mr. DiLeo spends a chapter looking at challenging behaviors
which people with disabilities may exhibit in their efforts to
be heard. Not only does he dispute some of the older,
physically-punishing responses to challenging behaviors, he also
points out where some of the more modern methods to control
behavior may fail to address the real communication which the
client with disabilities may be trying to express. He suggests
that staff establish trust with clients before attempting to
mold the behaviors which staff deem inappropriate.
Raymond’s Room takes a big step in correcting myths which the
general public has about people with developmental disabilities.
But, it goes much further than this. It illustrates how those of
us in the service-delivery system unwittingly perpetuate some of
these same myths in spite of feeling that we are more
enlightened than some in the general public.
The current slogan of “people first” is a common theme woven
throughout the book. There is little doubt that many of us when
we perceive an individual with disabilities tend to first look
at the disability before we see the common humanity that we all
have. This is a lesson for all of us—even many people who work
with people with disabilities.
Mr. DiLeo coins a new phrase—the disability industrial complex.
This phrase seems to be a take-off on an older term referring to
the military-industrial complex which was used to describe
American society from the 1960’s to the present. Many who used
the second term were referring to a crushing “system” where the
individual’s needs were overlooked in order to perpetuate a
system for its own sake.
The author seems to suggest that those of us in the disability
field have also created a system which perpetuates itself rather
than serving those for whom it was intended. Social service
agencies are challenged to look at their policies to insure that
we are building our policies to serve rather than to control.
This book will prompt some serious introspection.
Raymond’s Room reminds us all that people with disabilities have
the same needs as everyone. They value privacy, accomplishment
and interdependence. In short, they want a place in society just
like everybody else. After our struggles with segregation when
it referred to people of color, it appears we can take a further
step in application of what we have learned to people with
disabilities.
Learning to truly listen to people with disabilities is an
acquired skill. Sometimes we continue to look at people with
developmental disabilities as having deficits which it is our
duty to “fix”. We identify the deficit, and we decide how to
correct these so-called deficits. Somewhere in this process, we
may lose touch with what the person with disabilities wants. We
are challenged to change some of our very basic attitudes which
we may not even be totally aware exist.
What binds us to other people? What creates a sense of
community? Mr. DiLeo points out that we have identities as
belonging to certain groups. We may be a parent. We may be a
voter. We may have an identity as doing a certain type of work.
We may belong to a particular organization. Most of us have an
identity in various groups, and the sum of all these identities
defines who we are and how we fit into our community. People
with disabilities are much more than the disability which we
have.
Some of us are democrats, republicans, or independents. We come
with various colors to our skin. We may be an auto mechanic, a
cashier or a pediatrician. We are multi-faceted, and as people
identify with us because they have a similar interest, a bond
forms between us. We are connected. We do people with
disabilities a service when we help them discover who they are
in the broader world out there.
Mr. DiLeo emphatically reminds his readers of the importance of
having a job which matches the interests and abilities of people
with disabilities. Of course this is important to all people,
regardless of ability. Workshops for people with developmental
disabilities do not match people with a job which reflects their
interests and abilities. The author objects to the use of
workshops to serve people with developmental disabilities on the
same basis he has used to object in every arena of life. They
are segregated facilities which are separate but not equal.
Does this book talk about people with developmental
disabilities, or does it talk about people with disabilities in
general? I think the answer to that question is both. Is Mr.
DiLeo qualified to write about the services of people with
disabilities? I think the answer to that question is yes. He has
worked directly with individuals with developmental
disabilities. He has taught special education. He has been a
director of an agency. He has been a consultant for agencies
working with people with disabilities. He has worked in a broad
spectrum of capacities.
Raymond’s Room has a 2007 copyright by Training Resource
Network, Inc. in St. Augustine, Florida. Its 212 pages read
fast. For those of you interested in further reading, it comes
with lots of references to other professional works. It may or
may not be in your local lending library.
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Raymond’s Room reminds us all that people with disabilities have
the same needs as everyone.
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Some kids thoughts:
“You really shouldn’t say ‘I love you’ unless you mean it. But
if you mean it, you should say it a lot. People forget.”
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CALENDAR OF EVENTS
May 8-10, 2007 The Aging Services Division of OKDHS is
sponsoring the 2007 Conference on Aging at the Reed Center in
Midwest City. The conference is free to people 60+ for
Wednesday, May 9. For information on cost the other days and
registration, call 405-521-2281.
May 19, 2007 The Oklahoma chapter of the National Association of
Mental Illness will be holding their Annual Walk in Oklahoma
City. For more information call 405-230-1900 in central Oklahoma
or 800-583-1264 statewide.
June 7-10, 2007 The University of Central Oklahoma is sponsoring
the 8th Annual endeavor Games for athletes with physical
disabilities. For more information call Katrina Shaklee at
405-974-3144 or email kshaklee1@ucok.edu.
June 14-16, 2007 The Oklahoma Association of the Deaf will be
hosting their statewide conference at the Tulsa Community
College-Northeast Campus. For cost and registration contact
Glenna Cooper at 800-697-9445.
June 21-24, 2007 The Oklahoma City chapter of the Hearing Loss
Association of America will sponsor the national convention in
Oklahoma City at the Renaissance Hotel and Cox Convention
Center. For more information call 405-951-8383 or go to
http://www.okc-hearingloss.org.
If you have an event coming up relating to disability, let us
know at 800-522-8224 and we’ll help you publicize.
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