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VOR Weekly E-Mail Update
September 8, 2006
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1. October 2007 is VOR Awareness Month! Please
Participate!
2. Southwestern Virginia Training Center's RCSC
has Successful First Year
3. Connecticut: Name Change Divides Activists
4. Illinois: `Never give in. Never...':
Families of autistic children may
find hope--as well as despair--in the stories of
`autistic savants,'
because most such children will never display
such special skills or
abilities.
5. Waiting and Wishing - Statewide list compiled
for developmentally
disabled who need help
COMING UP: Due to travels for VOR, there will be
no update on Friday,
September 15, 2006. The next update will be
Friday, September 22. An update
on federal legislation is tentatively planned
for Sept. 22.
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1. October 2007 is VOR Awareness Month! Please
Participate!
----------------------------------------
Summary: VOR is looking for volunteers and ideas
to make the 2007 VOR
October Awareness national event as successful
as possible. In past years,
VOR members have pursued different programs to
help raise awareness about
the good work of VOR, while also encouraging new
memberships. The most
popular approach is a letter to individual
members of family and statewide
organizations sharing information about VOR and
asking for membership
support. For 2007, VOR has a template letter
that we can easily tailor to
your state. We can prepare the mailing for you,
or cover the costs of the
mailing if list privacy is an issue. We welcome
your participation in any
way; flexibility is the key. We are here to help
you. A note from Tony
Padgett, VOR's Director of Resource
Development, describing VOR Awareness
Month, follows. Please be in touch with Tony
with your ideas and offer to
help! Together we can build on past successes
and make 2007 better than
ever!
October 2006 is VOR Awareness Month
Please participate!
This successful annual event provides VOR
members, including individuals,
family organizations and facilities, the
opportunity to collaborate for the
benefit of persons with mental retardation
everywhere!
The purpose of VOR Awareness Month is to make
more people aware of VOR and
generate a case for financial support of our
organization. VOR Awareness
Month activities will help educate individuals
about the important national
role that VOR has and the absolutely critical
and direct impact on state
and local trends. This education is carried out
collectively by the
grassroots efforts of VOR members, like you, at
the state and local levels.
As an active VOR member you are fully aware of
VOR's impact, and the vital
need to continue to disseminate our shared
message. We want to help you
make more people aware of all of the things VOR
members are doing together
to protect all of our loved ones with mental
retardation.
To begin our planning of the 2006/07 fiscal
year, we want to hear from you!
Flexibility is the cornerstone of planning for VOR Awareness Month. We
welcome new ideas from you -- events that you
know will work in your state
or locale -- so we can share those with other
members wanting to help but
not exactly sure where to start.
To help you, VOR stands ready to provide the
background materials and other
support that will be needed, including materials
and speakers at
organization meetings. We will come and speak
to your organization to
share information on VOR activities and
developing trends in services and
policies affecting persons with mental
retardation. Or we will provide
literature for you to share. Please tell us when
your family meetings are
held.
Together we can accomplish much. Thank you very
much in advance for your
participation. I look forward to hearing from
each of you.
Sincerely,
Tony Padgett
Director of Resource Development
anthonypadgett@sbcglobal.net
847-253-6020
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2. Southwestern Virginia Training Center's RCSC
has Successful First Year
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Summary: Congratulations SWVTC!! An article
follows telling of this
facility's first successful year operating a
Community Resource Center!!
FOR IMMEDIATE RELEASE
August 16, 2006
For more information contact:
Karen Poe, 276-728-312;
karen.poe@swvtc.dmhmrsas.virginia.gov
(Hillsville, VA) -- A new system for providing
services for citizens with
mental retardation and those caring for them was
established in southwest
Virginia thanks to a bill that established
Southwestern Virginia Training
Center (SWVTC) as a Regional Community Support
Center (RCSC), one of two
started in the state in July 2005. This
resource center is designed after
a model started at Northern Virginia Training
Center.
The SWVTC center is a residential facility that
trains individuals to live
as independently as possible. Up to 218 mentally
retarded residents from
the 17 counties and four independent cities in
the region live on the
campus, but the new program allowed the center
to serve as a hub to provide
a range of services throughout the greater
community.
"This new program represents a real opportunity
for SWVTC to have a
positive impact not just on the lives of persons
with mental retardation
who live at our facility but also to provide
assistance to persons who live
in our region of the state," said facility
Director Dr. Dale Woods, Ed.D.
"We planned to provide outreach services for
consumers through
behavioral/psychiatric consultations, dental
services, training for
community providers, community services board
staff, parents and teachers,
and assistance with mobility/balance training in
coordination with
engineering departments at Virginia Tech. SWVTC
was already providing
limited outreach services through technical
assistance activities and
providing technical assistance through our
Pathways Mental
Retardation/Mental Illness Program. Through
these limited outreach
activities, we saw a great need in Southwest
Virginia for specialized
professional services. We now are able to help
fill that void in the
service delivery system." The first year,
SWVTC's RCSC provided 1,851.25
hours of technical assistance to over 135
different clients.
SWVTC's RCSC initiated training opportunities
for people in the region and
the programming was positively accepted. A
kickoff workshop was conducted
August 2, 2005 in Abingdon, Virginia, to
introduce the components of the
program to clients, their families and community
service providers.
Additionally this summer, a training session on
autism was provided by Dr.
Lynn Adams from the Radford University Autism
Program. In mid-August, Dr.
Dennis Reid provided training to over 150 people
on alternate ways of
teaching and working with individuals with
challenging behaviors. Another
well attended training was given by Dr. Tom
Pomeranz on Active Learning and
Universal Enhancements.
"I have been so surprised at the positive
outpouring of the community
people," said Karen Poe, SWVTC's staff
development director. "Everyone is
so appreciative of the training opportunities we
have provided and I've
been really surprised of the number of people
who have attended the
trainings." The RCSC provided training totaling
1,746.5 hours for 328
community folks.
"RCSC would like to promote joint training
between all the community
staff," Poe said. "The people who benefit are
the people with mental
retardation in southwest Virginia. It eases
transition when clients move
from restrictive environments like the training
center to less restrictive
environments like group homes and supported
living situations and improves
success in placement."
The biggest success of the RCSC the first year
was the dental clinic. The
first dental clinic for community individuals
was held on September 22,
2005 and for the first year, 42 clinics were
held. In these clinics, staff
saw 126 different clients for a total of 365
visits. Community people came
from Mount Rogers CSB, Cumberland Mountain CSB,
Highlands and the New River
Valley. Dental services included everything
from cleanings to fillings to
root canals to making dentures and partials.
All these services were free
to the recipients.
Another successful venture of the Resource
Center was camps. One camp was
taught by sixteen Radford University Graduate
Students in Speech and
Language by Dr. Lynn Adams. The camp lasted a
week and was held on the
grounds of SWVTC. Fourteen children from the
ages of 5 to 14 attended the
camp that had a different theme each day, like
camping day, pirate day and
beach day. There were many astounding
accomplishments among the children
and SWVTC staff enjoyed watching them on campus
all week.
Radford University Recreation Department held a
camp for autistic children
this summer. The children were ages 10-15 and
were exposed to adventure
type activities like the climbing wall and high
rope courses. Other
activities included arts and crafts, cooperative
games, team building
initiatives and the "flying squirrel".
"This new outreach program reflects the
confidence that the General
Assembly and the Governor have in SWVTC to
provide a high level of services
for persons with mental retardation. It is
proving to be a rewarding
challenge as we work together to establish this
important service," Dr.
Woods commented.
Families interested in accessing the RCSC should
talk with their CSB case
managers. Additionally, interested parties can
access information on
SWVTC's website at
www.swvtc.dmhmrsas.virginia.gov under the RCSC
tab.
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3. Connecticut: Name Change Divides Activists
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Some Want Agency To Drop `R' Word
By Penelope Overton
The Hartford Courant
September 3 2006
Chad Sinanian hates the "R" word.
Under the law, the 39-year-old Danbury man is
mentally retarded, but the
political activist winces at the degrading words
that others use to define
his intellectual disability.
"This label limits persons with disabilities'
efforts to live in society as
equal human beings with dignity," Sinanian said.
He said it "makes it
difficult for us to be accepted."
Sinanian wants to strip the "R" word from the
title of the state Department
of Mental Retardation, the state agency that
serves those with intellectual
disabilities. Sinanian is the treasurer of
People First of Connecticut, a
political action group of people with
intellectual disabilities that has
been campaigning for a new agency name since
1991.
Now, after years of delays and debate, the state
agency is studying whether
it should follow the national trend and call
itself something "more
respectful," Commissioner Peter O'Meara said.
A hearing on the name change will be held
Thursday in Hartford.
But People First has discovered that, even in an
era of political
correctness, the process of renaming a state
agency can be costly,
complicated and, in this case, unexpectedly
controversial.
The clash comes not from insensitive outsiders
who haven't felt the sting
of the "R" word, but from old-guard activists
who have spent decades
fighting on behalf of people with disabilities.
The campaign is dividing
the disability community, pitting people like
Sinanian against advocates
afraid that a new name might lead to fewer
services for those with mental
retardation.
Over the past decade, other states have dropped
the phrase from their
agency titles in favor of "intellectual
disability," "developmental
disability" or, in some cases, simply
"disabilities." According to the
National Association of State Directors of
Disability Services, Connecticut
is one of only 12 states to use the term "mental
retardation" as the title
of the agency that serves this community.
The Connecticut Department of Education no
longer uses the words "mental
retardation." The Connecticut Council on Mental
Retardation and The
Association of Retarded Citizens of Connecticut
have changed their names,
as have the President's Council on Mental
Retardation and American
Association of Mental Retardation.
The term remains in use as the official medical
diagnosis.
"It's a very hot issue for us," O'Meara said.
"We don't want to offend the
people we serve and we don't want to be the last
state in the country left
still using the term."
But some worry that a new name might confuse
longtime supporters of this
community, including lawmakers in charge of
budgets and people who donate
money to support groups and services.
Bob Wood, a New Haven County activist who has
traveled to Hartford and
Washington to lobby for his daughter, said
lawmakers don't know what words
such as "developmentally disabled" mean.
"Through the years the words `mental
retardation' have opened many doors
for our sons and daughters," said Wood. "We need
to really think hard about
changing the name."
June Barakat of Naugatuck is not offended by the
word "retardation." Her
son is mentally retarded, or, as the dictionary
says, "slow to learn." The
problem, she said, is ignorant people.
"When I hear students saying `retard,' I hand
them a dictionary and educate
them," Barakat wrote on a weblog discussion
hosted by the Connecticut
Council on Developmental Disabilities.
"Retardation is a condition. By
changing the name, it won't go away, and neither
will ignorance."
For Joseph and Nancy Dennin of Trumbull, the
renaming debate boils down to
money. They don't find the word "retardation"
offensive, but understand
that some people do.
Joseph Dennin worries that a new name might
appear to broaden the class of
people served by the agency, which now assists
only those who meet the
medical definition of mental retardation.
Dennin said mentally retarded people such as his
30-year-old son, David,
get too few services from DMR as it is. The
waiting lists for housing and
respite care are years long. A new name might
encourage groups not served
by DMR - such as people with autism or fetal
alcohol syndrome - to go to
court to demand their share of state services.
"I sympathize, but my mission is to protect
David," Dennin said. "Any
dollar spent changing the name, fighting off a
lawsuit or serving new
groups is one dollar less for the mentally
retarded."
Most other states that have renamed their
agencies already serve other
groups, Dennin said. Connecticut is one of only
five states whose agencies
serve only the mentally retarded.
O'Meara said a new name would not change which
groups the department
serves. State statutes restrict eligibility to
people with a medical
diagnosis of mental retardation.
To qualify for DMR services, a person must score
69 or lower on an IQ test,
be unable to achieve personal independence
without assistance and be
diagnosed before turning 18.
In Connecticut, about 32,000 people fit that
definition, according to 2002
data. Of that number, about 40 percent, or about
12,700 people, apply to
DMR for assistance.
O'Meara said the debate over whether to expand
DMR eligibility is a
separate issue. The agency is launching a pilot
program to serve some
people with autism, but numbers served will be
quite small.
A 2002 state-funded study recommended expanding
services to people with
developmental disabilities, but the legislature
has never pursued it. The
study estimated it would cost about $2.4 million
to expand DMR
administration to serve the approximately 24,000
Connecticut residents who
have developmental disabilities without mental
retardation. The study
predicted between 20 and 40 percent of that
population would seek state
help. At that rate, the annual cost of expanded
services could reach $147
million.
Many people working on behalf of individuals
with disabilities other than
retardation hope a new name is a step toward
inclusion, but they also worry
that it might mislead the public.
Changing the name without changing the agency's
mission might further the
public perception that all people with
disabilities are served by the
state, said Michele Bidwell of Willington.
Bidwell is the mother of
7-year-old twins with fetal alcohol syndrome who
don't qualify for any DMR
help, even though they may never be able to live
on their own or hold a
job.
"If you give it a new name, the public might
think they've done their job,"
Bidwell said. "But there are thousands of kids
out there like mine that
people just assume are getting help."
The state will gather public comment through
Nov. 15. The agency will use
that information to make a recommendation to the
state legislature by Jan.
1. Renaming would require new legislation.
The public can join the debate about whether the
state Department of Mental
Retardation should be renamed in three ways:
Testify at a public hearing in Room 1D of the
Legislative Office Building
in Hartford at 9:30 a.m. on Thursday.
Fill out a questionnaire that can be downloaded
at
http://www.dmr.state.ct.us/NameChange.htm.
Submit written comments to The Connecticut
Council on Developmental
Disabilities' weblog at
http://www.ctcdd.org.
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4. Illinois: `Never give in. Never...':
Families of autistic children may
find hope--as well as despair--in the stories of
`autistic savants,'
because most such children will never display
such special skills or
abilities.
---------------------------------------------------------------------------
Summary: This is a heartwarming editorial. As
with the article before,
regarding the political correctness of the word,
"retarded," beyond the
labels and, as described below, the headline
stories of people with autism
doing amazing things, there are people with
disabilities that need the
public's support and understanding. As Ms.
Barakat in the previous article
noted, "Retardation is a condition. By changing
the name, it won't go away,
and neither will ignorance."
By Robert Hughes
August 13, 2006
The Chicago Tribune
I caught a story on the news recently about a
boy with autism who,
amazingly, has mastered karate. Not too long
ago, that same channel
presented a story about an autistic basketball
prodigy.
Next week--write this down--some program will
stun the world with an
autistic spelling bee champion.
I know this with the clairvoyance of a father
who has never witnessed such
a stunt performed by his own autistic son, a
big, handsome 20-year-old with
a sort of Vince Vaughn charisma but an inability
to converse or safely
cross a city street. If Walker could say,
"Karate, what's that?" a
Richter-scale joy would rock our house.
Walker's failure to produce a camera-ready
moment rankles not only because
of others' spectacular successes but because
Walker himself seems, in some
eerie ways, so tantalizingly near normality.
Sure, he can't converse, play a game, make a
phone call or, most
alarmingly, speak up for himself. But contrary
to stereotypes about autism,
he's empathetic, has a sense of humor and
radiates affection for everybody
in his life. Yes, he drives us nuts with
incessant demands for pizza,
spaghetti and french fries; he delights in
trying to read, trying to play a
game, trying to do almost anything, actually.
And although he has no "autistic savant" gifts
and no particular real-life
competencies, either, he does have a specialty:
astonishing good cheer.
Walker is a great guy, but he's no TV medical
segment star.
The news media's obsession with amazing autism
stories is fed by a cottage
industry of amazing parent narratives, books
stretching farther out on the
sea of Amazon.com than anyone would care to
gaze. These books tell of
remarkable mothers and fathers remarkably saving
their disabled kids.
The typical scenario is this: After discovering
a child's autism around age
2--or spotting autism's approach even
earlier--the parents get down to
business. Ignoring negative prognoses, they
mortgage the home, quit their
jobs and heroically focus on their child.
And--voila!--all the sacrifices
pay off in an amazing breakthrough.
These parents swim with dolphins or find a
combination of vitamins or turn
their house into a tough Skinnerian boot camp.
Or maybe they locate a
medical guru--an unsung Louis Pasteur--who has
the answer, but unbelievably
no one credits him.
The truth is, such efforts are not unusual.
Every parent I know has lived a
similar saga--that is, similar at least up to
the point of magical success.
None of these "cures" has swept the autism world
because, quite simply, no
cure works for all or is complete. My wife,
Ellen, and I have tried many
tacks with only slight forward progress.
Of course, some of the solutions are worth
pursuing. Medications and
terrific teachers have helped Walker and
continue to help him. A
neurologist cured Walker of the nighttime
seizures that dogged his
childhood. A speech therapist befriended him and
helped him communicate. A
wonderful school is helping Walker prepare for
his dream in life: a job.
But the mere fact that extraordinary stuff
happens should not blur the
reality: Despite the incredible efforts of
millions of parents, millions of
youths like Walker remain uncured.
The media's love affair with spectacular autism
stories is, I think,
damaging.
First, all these stories leave the impression
that, unless a severely
autistic person has some recognizable talent, we
cannot connect with him.
This isn't true. Walker and every one of his
low-functioning classmates are
people whose friendship is rewarding. Just ask
their teachers.
Second, such stories distract us all from a
shattering fact. Because one of
every 166 children born in this country is
affected by some form of autism,
a huge number of children will be--and, like my
son, are--entering
adulthood unable to live independently.
These people need massive financial help in the
form of well-staffed group
homes, a need that is not being met.
Finally, such stories tend to make parents whose
children have not made
some astounding stride lose heart about the
future. Comparing these
over-the-top tales of victory to their own
failures, parents are tempted to
discount every new therapy and all hope. This is
a mistake. Ellen's mantra
is a Winston Churchill line: "Never give in.
Never give in. Never, never,
never." And why should we? The brain is a
mystery. Valuable discoveries can
be made. You never know.
The other night I was trying to watch TV while
Walker was deeply into his
maddening "PIZZA, PIZZA, PIZZA" routine.
Oddly ambitious for a change, I turned off the
set and dug up an old book
of comic verse we had not looked at in at least
10 years. I opened to a
random page and a wide smile lit up my son's
face. He rattled off the poem
from memory, clear as a bell.
Walker's little revelation of hidden
intelligence and memory and loving
connection will not make the news, but its
message hit me with the force of
a karate chop to the solar plexus: You just
never know.
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Robert Hughes teaches English at Truman College
and is the author of
"Running With Walker: A Memoir."
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5. Waiting and Wishing - Statewide list compiled
for developmentally
disabled who need help
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Summary: This article reports that there are
11,200 people on the waiting
list for services in Illinois. Efforts re-open
Illinois' Lincoln
Developmental Center have stalled, despite the
completion of a
state-of-the-art facility. Pressure from
anti-facility advocacy groups
sidelined the Governor's original intent. The
legislature is now
considering a proposal to use the facility as a
home for veterans.
According to the Kankakee Daily Journal, August
20, 2006, Good Shepherd
Manor in Momence, an ICF/MR for 124 men,
provides residential care for the
developmentally disabled. Good Shepherd has
space for 124 men. Last year,
president Jim Czerwionka says, there were
exactly three openings, and
there's a waiting list of 38. Shapiro
Developmental Center has seen its
census of developmentally disabled residents
slowly shrink over the years,
says Director Ira Collins. Fifteen years ago,
there might have been 800.
Now there are 610 residents on the Kankakee
campus.
.
Waiting and Wishing - Statewide list compiled
for developmentally disabled
who need help
By Phil Angelo, Senior Editor
Kankakee Daily Journal
August 19, 2006
They call it the PUNS list, but it's no laughing
matter for advocates of
the developmentally disabled in Illinois.
PUNS stands for Prioritization of Urgency of
Need for Services. It's a
waiting list for individuals with developmental
disabilities who are not
receiving the state services they need.
Arc of Illinois, an advocacy group fo
r residents with developmental disabilities,
says the list now includes
11,294 people across the state. Arc estimates
that there are 200,000 people
with some type of developmental disability in
Illinois. That figure
includes persons with an IQ below 70, autism,
cerebral palsy, epilepsy or
other specific neurological conditions.
Tony Paulauski, executive director of the Arc of
Illinois, says the number
in Illinois may, in fact, be tremendously
understated.
"Indiana has 25,000 on its waiting list," he
says. "Pennsylvania has
50,000."
"There's never been any sort of public relations
campaign to gather names
for the list," he says. Two specific problems
seem to crop up, he says.
In Illinois persons below 21 receive training
through school programs.
"Then they hit 21," he says, "and can wind up
sitting around watching
television at home because they either don't
know where to get help or
can't get help."
Another problem is the aging population.
It's common for parents to provide home care for
their sons and daughters,
even as both parents and children age. The
Family Support Group, another
advocacy center for developmentally disabled
services, says there are 241
adults with developmental disabilities living
with parents 80 and older.
---------------------------------------------------------------------------
Tamie Hopp
REFERRAL/MEMBERSHIP/CONTRIBUTION FORM
THREE EASY WAYS TO SUPPORT VOR > REFER,
CONTRIBUTE OR JOIN
THANK YOU FOR YOUR SUPPORT!
TO JOIN OR CONTRIBUTE: $25 per individual, $150
per family organization, or
$200 per provider/professional organization.
Extra donations are welcome!
You may pay by credit card or check.
TO REFER SOMEONE TO VOR: Use the form below,
including the additional
sections for referrals.
Mail the completed form (if joining or
contributing) with payment to:
Voice of the Retarded
5005 Newport Drive, Suite 108
Rolling Meadows, IL 60008
847-253-6054 fax (for referrals or credit card
payments)
vor@compuserve.com (for referrals or credit
card payments)
FOR REFERRALS: ____ The contact information
provided is for someone I
think would consider membership with VOR.
FOR REFERRALS: _____ You may use my name in
any correspondence with this
individual. My name is ________________________.
____________________________________________
Name
_____________________________________________
Address (if paying by credit card, use billing
address). All forms must
include complete address including zip code)
_____________________________________________
City St Zip
_____________________________________________
Phone Fax
_____________________________________________
E-Mail
_________________________________________________
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applicable)
VOR now accepts Master Card and Visa. If paying
by credit card, please
provide the following information:
Amount to charge to card:
___$1,000 ___$500 ___$250 ___$150 ___$50
___$25 $_____ Other amount
_____ Master Card
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Card Number: ___________________________________
Expiration Date:
__________________________________
Cardholder's Signature:
___________________________
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