Welcome
ASO-LCC new chapter representatives,
Amber Perry and Jennifer
Paternostro. July, 2010
Meeting Dates:
1/31/05 - 4/18/2005
- 9/28/2005 - 4/21/2006
- 5/23/06 - 8/16/2006
- 2/12/07 - 3/12/07 -
9/5/2007 - 11/07/2007
December 12, 2008 ASO-LCC meeting
notes:
Present: Tim Mueller, Mary-Minn
Sirag, Janice Medvin, Tyron Janis, Tanya Pacheo, Michelle Cheney.
Proposal #1 Social Skills Classes/Support
Group - #2 Gluten Free Bakery - #3
Life Stories Video
Autism and the Police Discussion
Agenda: Grandparents Support Group
As no one attended the meeting with an interest in this topic, it
was tabled.
Chapter Initiative Grant
Three proposals were presented at the meeting. All of them sound
exciting. Tim will forward these proposals to the ASO board for
consideration.
1. Social Skill Class
/ Support Group
KindTree's
support group has expressed a strong interest in starting up a monthly
opportunity for social skills training and social outings to practice
the social skills training and have fun together. The monthly gathering
would alternate between social activities and social skills coaching.
The groups would take place at 6:30 p.m. on Tuesday, to give folks
a chance to eat before the group. I figure that turnout will be
anywhere from 9 to 15 people. Michelle, Rhonda and I (Mary-Minn
Sirag) would facilitate the social skills class and make arrangements
(reserving a venue and such) for the social activity group.
Every other month, the group would decide what
social activity they'd like to do. Since many--if not most--of our
participants have little money and are hard pressed to pay for admission
to more expensive venues, I am asking for $150 to help defray admission
charges/fees and a beverage or such during the social activity.
($150/meeting to cover admission and a drink for participants and
the three facilitators.) What money isn't spent on a less expensive
activity or a low turnout could be applied to more expensive ones.
This piece would cost $900/year.
Alternating would be an informal social skills
class. Doris Germain, who ran a successful social skills class four
or so years ago, is willing to jumpstart the social skills training
by being a presenter at one or two of our social skills classes,
and then providing us with a curriculum with which to proceed. Michelle,
Rhonda and I can facilitate this piece. This would cost $25-35 to
rent a room at St. Mary's Episcopal Church. This piece would cost
$150-210/year
Facilitation by Michele, Rhonda and I would
be gratis.
The total would come to $1,050-1,100/year.
Partial funding is welcome.
Mary-Minn Sirag
Tim Mueller
Lane County Chapter Reps
2. Gluten Free Bakery
and profit Sharing Business
My name is Michelle Cheney. I am the mother
of a beloved 11-year old autistic son named Raja. I am also
the author of Climbing
Out Of Autism One Bite At A Time, a self-help book written for
parents of autistic children who are interested in dietary intervention
and environmental detoxification to promote global developmental
gain (published in 2000 and available on www.amazon.com and the co-producer
of a related documentary entitled Reaching Raja: A Miraculous Journey
Into Autism Recovery (2005).
Although my son's progress required that our dietary intervention
go much deeper than the gluten-free, casein-free diet utilized by
many autistic children, I learned about gluten-free baking as a
result of my son's diagnosis and my desire to help him think and
feel better by eating gluten-free. Finding joy in baking since
childhood, I was fascinated with gluten-free baking, delighting
in adapting old favorites to gluten-free equivalents. Moreover,
because my son's food sensitivities were so vast, I created recipes
without many ingredients that I had previously considered necessary,
surprised at the delicious, satisfying results. I have
created treats ranging from old favorites such as cakes, cookies,
muffins, brownies, and pies, to more exotic desserts such as Baked
Alaska and gorgeous children's birthday cakes using natural, chemical-free
coloring and flavoring. Due to my love of baking, and because
I would like to create a social gathering place for ASD families
and friends, I would like to apply for the Autism Society of Oregon
Chapter Initiative Grant to open a small gluten-free bakery
and coffeehouse featuring a selection of gluten-free sandwiches
and comfort foods as well.
In the eight years since my son's diagnosis, I have had the good
fortune to speak with hundreds of families with autistic children
in the U.S. and abroad. While few families maintain an entirely
gluten-free home, most families serve gluten-free foods to their
autistic children, careful to separate gluten-free and traditional
foods to avoid cross-contamination, but they maintain a traditional
diet for themselves--one that includes products containing gluten.
In an effort to meet the needs of ASD families, as well as other
who avoid gluten and those who eat it, the bakery menu will contain
gluten-free and traditional selections. In order to avoid
cross-contamination, the bakery will produce only gluten-free
foods--pastries, breads, and comfort foods such as macaroni and
cheese, and will contract out (purchase) traditional treats, exclusively
using only gluten-free ingredients in the kitchen. Additionally,
there will be GFCF selections and special orders for people
with multiple food sensitivities (corn, soy, sugar, etc.).
I am well-versed, and enjoy, creating recipes to accommodate
special needs.
The names of products/product lines are terms used in the ASD journey
such as Early Intervention (for coffee, tea, juices, and energy
drinks) and Death by IEP, Revival by Chocolate! (for chocolate products).
The names of products are intended to give patrons a knowing laugh
(which they did when I presented my idea at the Lane County Autism
Society meeting), not to alienate other customers. Autism
is the background, but not necessarily the focus, of the trials
and celebrations represented in the products and product lines.
All products are top quality.
The atmosphere is casual and accepting--a warm, relaxing coffee
house where parents and friends can gather. There will be
meeting space for 12. Gluten-free bread will be available
to purchase by the loaf. I believe that parents and friends
of ASD children of any age, as well as others related to the special
needs' journey (teachers, therapists, aides, advocates), and those
practicing either a gluten-free or a traditional diet would patronize
the bakery. I also believe that, with a high-traffic location
and excellent service, locals will frequent the establishment as
well.
Finally, the bakery will be set up like the Newman Foundation which
uses a portion of the proceeds from its food sales to fund non-profits.
The bakery would benefit local ASD non-profits such as the Autism
Society of Oregon, Lane County; KindTree; and Bridgeway House.
I am working with business advisors from SCORE and the Business
Development Center at Lane Community College. I would like
to open my doors for business in January 2009.
Thank you very much for this opportunity to share my enthusiasm
for this project! Please do not hesitate me if I may provide
more information.
Sincerely,
Michelle Cheney
H: 541-343-3774
C: 541-228-4456
autismalternatives@hotmail.com
3. Life Stories Video
Project:
To produce a DVD featuring the life stories of adults on the autism
spectrum. The DVD will be used to inspire, educate and inform others
on the spectrum, as well as families, teachers, and human service
professionals.
Background:
Rob Tobias has been producing video and music with his company Maximo
Productions since 1991. He recently became interested in the
concept of “Life Stories”, the telling of a person’s
life experience through their own words, and stories. He is currently
working on a video called “Walks With Ron” in which
Ron, a retired lawyer who became a Hindu and then as he says, an
“Undo”, relates his story over images of him taking
walks in San Francisco. “Life Stories” include, interviews,
music, spoken word, and natural sound with video of the person doing
whatever they do in their daily life.
Janice Medvin has been working with people with
developmental disabilities for the past 15 years. She’s dedicated
her work to those on the Autism Spectrum eight years ago, and has
been witness to many lives, and many stories. Janice has been involved
in community events through Kindtree Productions, and other local
Lane County groups. She has a strong desire to give voice to those
who are often unheard.
The Production:
The production will include interviews with three adults on the
autism spectrum scale. The questions will focus on the history of
their diagnosis and how that affected their lives as well as the
lives of family and friends. We will ask about their specific needs,
interests, and problems as associated with their autism. We will
also ask what type of community supports has benefited them and
how it has helped them find solutions when needed. Interviews will
be tied together using narration and music.
Resources:
Maximo Productions will provide the video camera, microphones, and
lighting needed to record the interviews. Rob Tobias and Janice
Medvin will each take part in conducting interviews. Janice will
use her experience to line up the subjects for the interviews and
to be liaison with the granting organization. The Mini DV tapes
will be transferred to DVD and logged before capturing the best
parts into a computer. The program will be edited using the Final
Cut program on a Power Mac G5 computer. Scripting and Narration
will also be written and produced at the Maximo Productions studio
facility in Eugene, Oregon. The final product will be on a master
DVD that can then be duplicated.
Budget:
Rob Tobias of Maximo Productions works at a production rate of $40
an hour.
Janice Medvin’s hourly rate is $30-35 an hour. She has indicated
a willingness to volunteer her time on this project. Production
time for acquisition is estimated at 10 hours. 5 hours is estimated
to transfer to DVD (backing up) and log material. Transfer and editing
time will be 10-30 hours depending on the length of program and
detail of the production. Program length will be between 10 and
25 minutes. Scripting and Narration recording will also take 4-8
hours. Rob Tobias will serve as the narrator unless budget allows
for hiring another voice talent. Total hours are estimated to be
30 on the low end and 60 on the upper end. Tape and DVD costs would
be approx. $50 which does not include mass duplication.
A production like this typically will cost between
$1500 and $4000. Some factors include the length of the program
and the depth of the production value i.e. original music, graphics,
detail of editing, narration talent, etc… Packaging, Duplication,
and Distribution all would need additional funding.
We understand ASO may have some funding for
a project like this and also may have some ideas on how it could
be distributed. It may be possible to produce a shorter version
of the video that could be used to raise funds for a longer program.
If you are interested, would like to meet and discuss how we can
best proceed on this project.
Autism and the Police
Tim Mueller, who serves as a Eugene
Police Commissioner and chairs the Police Commission Universal
Access Subcommittee, talked with everyone about his efforts to create
policy recommendations to guide police interactions with people
with autism and other disabilities. Here are some of the elements
of the discussion.
- People on the spectrum would say "yes"
just to be agreeable, not because they really understood.
- It can be difficult to visually recognize
a person who has autism
- Knowing about autism in general, and knowing
individuals with autism can be very helpful.
- Use the ride-along offer from the EPD as
a way to get to know police officers and visa versa.
- EPD should receive semi-annual training updates
about autism
- Perhaps people on the spectrum would like
to carry an ID or autism info card?
- Officer could ask if a person is autism when
they suspect it is so.
- Give the person a chance to respond - don't
be hasty.
We did not schedule another meeting, but anticipate
one in February, when we will know which of the above proposals
will get funding.
Thanks for listening.
Tim Mueller, Chapter Rep, ASO-LCC
November 7, 2007 ASO-LCC meeting
notes:
Present: Larry Sullivan,
Tim Mueller, Eva Lamar.
Announcements:
- Eva is looking for self-advocates for CAC (Community Advisory Council).
The Consumer Advocacy Council meets quarterly to review the plans
and activities of the UCEDD. The Council consists of community
members and members of the UCEDD management team. The majority
of the members of the Council are adults with developmental disabilities
or parents of people with developmental disabilities. Council
membership includes representatives from the Oregon Council on
Developmental Disabilities, People First of Oregon, The Arc of
Oregon and Full Access Brokerage as well as other local community
organizations.
- KindTree “Autism
Rocks” is looking for volunteers to staff their art
sales booth at the Eugene Holiday Market Friday – Sunday
after Thanksgiving. Contact Tim Mueller for details.
- >Tim announced that he has been appointed to
the City of Eugene’s Police Commission. He
will serve for four years, providing guidance to the police and
mayor on police policy issues.
- Larry has been chosen to serve on the Lane
County Commissioner’s Mental Health Advisory Committee,
advising the Commissioners on issues related to mental health,
developmental disabilities and drug and alcohol addiction. Tim
also serves on this committee.
Take a Break Respite Program:
- Eva suggested some parents may be interested
in providing respite care for other families on a volunteer basis,
freeing up the ASO respite money for the outing expenses. Perhaps
even a sort of ‘respite bank’ where providing care
gives you credit for being given care in the future. Parents would
offer to volunteer once per year, and get a volunteer once a year.
Respond if you are interested.
- A new respite provider has come forward to
help with the respite program. Contact Carly at 310-980-0274 or
daughterlove@verizon.net . Carly
is a graduate student with much experience working with kids on
the spectrum.
- >Tim reported that this region has seen 7 callers
interested in this program and all of them have been approved.
Two have had their night out, and one has completed the application
process for reimbursement. That person provided a great thank
you letter, which is posted on the website.
There remains $1400 in this region’s allotment.
- Larry volunteered to help this program financially
in some way I don’t remember. What were you suggesting,
Larry?
- Eva suggested people wishing to help solicit
in-kind donations from hotels, restaurants, entertainment venues,
etc, be given an ASO-LCC letterhead and a cover letter about the
stress of raising a child with autism to help them in that effort.
Such donations would help improve the program. If anyone has a
good story for such a letter, please let us know.
Early Screening and Prescriptions:
- Tim said he was concerned that pediatricians
recently went on record advocating early autism screening for
everyone, and having that news coupled with the realization that
80% of kids with autism are prescribed psychiatric drugs. Go
here to see the article.
- Kids with PDD, bi-polar and more also experience
significant prescription rates.
- Larry and Eva both replied that early diagnosis
is key for maximum future development.
- It was also noted that cultural differences
can unduly delay diagnosis.
- County is doing a good job of accurately diagnosis
kids with autism.
- Mirror-neurons were discussed. Eva will be
sending something about that.
Autism Community Center:
We brainstormed some possibilities:
- Possibly use the 4-J Pathfinder building for
organizing after-school activities.
- Also maybe Bailey Hill School, where many rooms
might be available for community activities, though non-students
would have to be background checked.
- Is NextStep still looking for community partners
to set up a computer training classroom? Tim will find out.
- Larry spoke about having researched a program
of after school activities for kids with special needs which would
run 2 hours a day after school for about $30,000 per year. He
received partial funding last year, but it wasn’t enough
to make it happen. We (who?) may be able to provide voc skills
building, life skills building, help with homework, a Adobe software
class, maybe adult mentoring.
- What already exists to serve this need? Perhaps
make a community map showing capacity, waiting lists, etc, from
a provider perspective. Perhaps a community meeting would be good
for this. Perhaps conduct a scientific survey of need in the community
to assess what is needed from the consumer perspective. (KindTree
has gathered a small sample of survey replies at their Autism
Retreat, their Autism Forum, and through an online survey. They
have not been tabulated)
- Eva will talk to U of O folks about how they
could participate in a center.
- Larry said the need is only growing. He said
about 20 kids are coming up from pre-school this year, about 15
have moved in from out of district, and about 25 are newly diagnosed
yearly, a rising figure.
We will continue to discuss this issue.
Next Meeting:
Tentative date: THURSDAY, January 10th.
6:30 PM Education Service Building
Please bear in
mind that the creation
of an Autism Community Center will not come about without your
help. Please do not hesitate to add your energy to this effort.
There is plenty of room in the ASO-LCC for your participation
and leadership.
Thanks.
Tim Mueller,
ASO-LCC, Chapter Representative
September 5,
2007 Meeting Notes
6:30PM, 4J headquarters, 220 N Monroe
Present: Larry Sullivan, 4J Special Ed Director; Tim Mueller, ASO-LCC
representative; Eva Fridlund, parent; Chris Edwards, parent and
Oregon State Congressman; and Amanda Mowdy, ARC of Lane County respite
coordinator.
Take a Break on ASO Respite Program:
Discussion centered on how to make this program most effective.
We each agreed to solicit "excursion" gift certificates
from various local restaurants, movie houses, hotels, etc. The ARC
is ready to publicize the program and KindTree Productions will
mention it in their next news FLASH!
The program has a budget of $1600 per region through 2007, when
it will be reviewed for effectiveness and future funding options
are considered. This is a much needed service and ASO-LCC expects
it to be well used. We will also ask folks who use the program to
provide a testimonial for future funding solicitation.
Legislative Report:
Chris Edwards spoke at length about the battle to pass the insurance
parity bill in the 2007 legislative session. The bill's language
was modified in order to pass through the committee (the biggest
hurdle), but once on the floor of the House it passed 53-0 despite
intense Insurance industry lobbying. This was attributed in part
through the fact that 6-8 other House workers and legislators have
a family member experiencing autism. Chris was eager to speak on
the need for a unified stance from the Autism Community and for
a concerted effort to support autism specific legislation. Our community
would benefit greatly from the establishment of a single voice,
of an "expert" source of autism info for the legislators,
and for a network of activists that could create e-mail campaigns,
visits to Salem, etc, to support legislative efforts. We agreed
it was of utmost importance to get together as a community, resolve
our differences and agree on a core group of policy elements to
support. We are determined to do more to make this happen.
Autism Resource Forum / Conference:
Eva Fridlund, relatively new to Lane County, spoke of her
impression that a lot of folks are unaware of all the resources
available to the autism community here. She hoped to organize an
event where providers could share their mission with families with
autism so that needed services are given where needed. She also
was interested in creating short "testimonial" videos,
a parent's 'getting ready for school' checklist, and a "day
in the life of Autism" video. KindTree may possibly work to
integrate her idea with their annual Spring Autism Forum. Other
activities could be accomplished with additional volunteer input.
Chris mentioned his wife Ali's
blog as a communication tool.
4J Report:
Larry Sullivan mentioned that in three years the number of kids
on the spectrum rose from 180 to 260 out of 2600 4J students. This
summer more that a dozen kids on the spectrum relocated to Eugene.
He has provided both out of town and inservice autism training for
teachers and staff, developed early intervention programs and established
the Pathfinder program, currently serving 25 kids. Larry will be
joining Tim Mueller on the Lane County Mental Health Advisory Committee.
This body advises the County commissioners on issues relating to,
among other things, developmental disabilities including autism.
Hand-outs:
Tim handed out these survey forms - KindTree's Autism Community
Center Survey and a parental
survey "To learn about how caregivers adjust to having
a child with a PDD (Pervasive Developmental Disorder) including
Autism, Asperger's Syndrome, Childhood Disintegrative Disorder,
Rett's Disorder or Pervasive Developmental Disorder-Not Otherwise
Specified."
This was a good meeting. I wish you'd been there.
Next meeting is scheduled for Wednesday, November 7, 6:30,
200 N Monroe.
See you there?
This is
a report on the March 5 meeting with Jim Torrey, March 12 ASO-LCC
meeting, and subsequent events of interest.
On March 5, 2007, I attended a meeting with
Jim Torrey, who was acting in behalf of a financial institution
representing a deceased customer who had left $16 million dollars,
as we learned at the meeting. $8 million was already earmarked or
gone, and $8 million remained. Mr. Torrey told us it was to go to
“literacy programs” in Eugene and Springfield.
The group who met as the ASO-LCC in February
had begun preparations of a proposal to offer at this meeting in
the hopes it would be eligible for some of the money. This proposal,
combined with a Bridgeway House plan, was presented to Mr. Torrey.
I think we were able to educate him about the scope and urgency
of the rise in autism diagnosis, as well as the heartbreak and struggle
parents experience. While the meeting failed in its initial purpose
- we didn't get any expectation of funding - it was successful in
building a relationship foundation.
March 12, the ASO-LCC met again to consider
the results of the meeting with Mr. Torrey. Larry Sullivan (4J),
Mary-Minn Sirag (KindTree), myself, and Anna Morrison were there.
There was considerable disapointment about the lost opportunity
for the funds. As Doug was not there, I present his letter:
Report from Doug Richards (President of Bridgeway
House)
The meeting on Monday the fifth was to discuss securing funds which
have been earmarked promote education and literacy. In order to
meet that requirement for literacy and education the idea was floated
to create a private school to serve the population with ASD. The
brilliant part of this idea is, as most everyone has experienced,
schools are community resource centers and a school can deliver
so much to this community which has been impacted by autism perhaps
more than any in the country. I do not believe that because of the
funding restrictions for these monies that a resource center
would have been eligible and because of this it was critical to
expand the vision; not only to become eligible for these funds but
to more fully address the needs of this community.
The idea of a school for
all children on the spectrum is something that we at Bridgeway House
and the Willow Learning Center have been exploring for sometime.
Lane County is perhaps one of the best places in America for this
opportunity. First and foremost because of the per capita incidence
of autism in this community there is a tremendous need. Secondly
with the close proximity of the University of Oregon, Oregon Health
and Sciences University, and private research firms there is an
amazing opportunity to help through research explore both educational
methods for teaching children on the spectrum and biomedical research
to help unlock treatments. Furthermore these partners have an exceptional
track record of securing funding for cutting edge research which
is so desperately needed. Third as evidenced by the growth of Bridgeway
House, KindTree Productions, and other support services we have
a phenomenally tight community which, it is my hope, will completely
get behind this idea of building a school and resource center.
I do not want to discount
the value of having a resource center for people on the spectrum;
however all of you know that money spent on education will provide
the greatest return for the dollar, especially early intervention.
We all know Mary-Minn and she is living proof of the value of education
and early intervention; it is because of the love, discipline and
hard work of her grandmother that she is the articulate person we
all know and respect today. With a school/resource center Lane County
can have both!
It has been said that
an ounce of prevention is worth a pound of cure. Having a school
to help build up the skills of boys and girls is far more efficient
than the cost of mending broken men and women in society; from her
experience as a county commissioner Anna Morrison can attest to
this first hand and may have something to add to this discussion.
Now building this school
and resource center is no small endeavor, but neither is the autism
epidemic that this community faces. It is for this reason that when
Jim Torrey asked me, “What do you want?”, to that I
responded by saying four hundred million dollars. This may seem
like a shocking figure for some of you, but I believe that this
amount is sufficient to not only provide all of the infrastructure
needs for a school/resource center but it will fund on going operations
in perpetuity through an endowment. I do realize that Jim Torrey
can, at the very most, help us with 2% of this. However as many
of you know through your fundraising experience, with matching grants
and visible support of the nature Jim Torrey can provide, these
funds can multiply rapidly. Also as many of you with fundraising
experience know that you always ask for more than you think you
might get.
By asking for four hundred million dollars two things were accomplished.
First it helped to provide Jim Torrey with the scope of the challenge
we face as a community with respect to autism. Secondly it demonstrated
that we have a broad long term vision to help the entire autism
community in Lane County.
Another possible point
of controversy with respect to this proposal is that it is my sincere
belief that Bridgeway House is better suited to spearhead this effort.
First Bridgeway House is already a resource center for this community
with respect to autism, and as such has a track record of success
which can be built on. The ASO-LCC, which I am not a member of,
is a relatively new and untested entity. It is my understanding
or misunderstanding that any funds raised for projects through the
chapter have to tithe to the state and national organizations; for
a project of this scope that could mean a significant amount of
money leaving this community where it is so desperately needed.
If I am mistaken in my understanding on any of these points please
let me know.
So in conclusion, now
it is time to roll up our sleeves and begin to identify things we
can do to refine and make this vision a reality. It will take the
hard work and cooperation of our entire community and I am hopeful
that everyone can get behind this expanded vision of a resource
center and school. There is a place for everyone at the table.
Currently our community
has the dubious distinction of having the greatest per capita incidence
of autism in this country. I can not speak for all of you, but I
would rather that we were recognized for being the most innovative
community in addressing this critical challenge. It is the right
place, it is the right time and we are the right people to make
this happen.
Should any of you have
feedback, questions, concerns, or want to get involved feel free
to drop me a note. Thanks for your time and energy and for wanting
to be part of the solution!
Doug Richards
douglasrichards@msn.com
Anna Morrison arranged an appointment with
State Rep Chris Edwards, the parent of a boy on the spectrum, for
a visit to his office March 19. I accompanied them on this visit,
bringing with me autism community contact info and KindTree’s
newsletter, as well as comments on the “insurance parity”
bill Mr. Edwards is working on (house bill 2918) and the Victory
Alliance 8 point agenda. We left info packets at several legislators’
desks, and briefly met with a sympathetic Don Bischoff, aide to
Sen. Morrisette (who is championing Sen. Bill 2535)
Mr. Edwards said that his bill (2918), which
had a hearing last week, suffered from a lack of cohesive community
advocacy and support, and supporting expert testimony. He expressed
a desire to see the Autism Community come together to show a united
and knowledgeable front. He asked if there was a statewide group
that could provide that. (It ought to be the ASO!) He is also waiting
for comments from the insurance industry and state insurance regulators
regarding their positions and the present interpretations of Oregon
mental health parity inclusions. Your support is still welcome in
his office.
Anna has made another appointment to visit Rep.
Paul Holvey April 2 or 3. Let me know if you are interested in joining
us. On the ride home, Anna urged us all to flesh out the proposal
presented so that we could begin matching its elements with agencies
and interested parties.
Bridgeway House continues to pursue the large
vision of a research school, clinic, etc. They are willing to spearhead
this effort and I can only encourage them. I expect many other community
partners will be a part of this, as well. I will urge KindTree to
continue to focus on their adult / teen / artist resource center
idea, seeing the future possibility of joining with BWH as a collaborator
in that regard.
The intention of the ASO-LCC is to foster cooperation
and collaboration in Lane County, ” The purpose of the Lane
County Chapter of the Autism Society of Oregon is to coordinate
delivery of services for a diverse autism community of all ages
and across all reaches of the autism spectrum; to advocate for,
serve, celebrate and educate the autism community; to collaborate
on services without duplicating efforts; to support and work with
other autism organizations; and to build and nurture a viable community
for young autists to grow up in and for our adults to thrive in.”
From the comments received from our politicians,
this is something we need to do to accomplish our goals. From the
events of the past few weeks, it’s clear we have a way to
go before we achieve that kind of consensus. But for the sake of
the people we serve, we must take that journey.
I have no plans at this juncture to call another
ASO-LCC meeting until the fall. Please let me know if you feel otherwise.
Your comments are always welcome.
Thanks.
Tim Mueller ASO-LCC
541-521-7208
ASO-LCC
meeting minutes (by Mary-Minn Sirag) Monday, February
12
2007, 6:30 to 8 p.m. at Bridgeway
House, 996 Jefferson Street, Eugene.
Present:
Tim Mueller, ASO chapter representative,
secretary/treasurer of KindTree Productions, member of Mental
Health Advisory Committee.
Larry Sullivan, Special Education Director of 4J School District.
Mary-Minn Sirag, ASO chapter representative, president of KindTree
Productions, art instructor and activity leader at Hilyard Community
Center, person with HFA
Nan Lester, therapist specializing in HFA and AS, long-time mover-and-shaker
in autism community, support group facilitator, parent of son
with Aspergers.
Neil Lyda, webmaster for Nan Lester, photographer for KindTree’s
autism retreat, person with Aspergers.
Cindy Herr, professor of Special Education at the U of O, director
of PASS Program;
Mary Ann Winters-Messiers, professor of Special Education at the
U of O, director of PASS Program;
Stephanie Dahl, parent of artistic prodigy with autism
Adam Maitland, special-ed. student at Pacific University, middle
school Instructional Aide in various middle schools, support person
for autists through Lane DDS and the Arc of Lane County.
Michelle Jones, elementary school teacher, founder and vice president
of KindTree Productions, mother.
Pat Wigney, Executive Director and founding member of Bridgeway
House, mother of daughter with autism, grandmother.
Isabel Ingham, professor at Portland State University, Development
Director at NextStep Recycling; mother and grandmother.
David Hawke, student at U of O, man with Aspergers.
Janice Medvin, support provider for adults on autism spectrum.
Max Lester, board member of KindTree Productions.
Lorraine Kerwood, Executive Director, NextStep Recycling.
Announcements from the PASS Program
PASS Program students will be conducting a study on girls 6 to 21
years old with Aspergers or HFA. The study will explore the origins
and development of special interests in these girls and women. Girls
under 18 need written consent from a parent or legal guardian. She
passed out flyers for us to disseminate.
For the past two years, the PASS Program has been trying to get
Special Ed. and Speech Pathology Endorsement for its graduates.
Though Mary Ann and Cindy have hammered out OAR language, the Teachers’
Standards and Practices Commission recently denied even putting
the endorsement up for vote. If they fail to get this endorsement,
the program could disappear as soon as two years from now.
Needless to say, Mary Ann and Cindy are not giving up on this. They
will be contacting influential representatives and asking the community
for letters of support. Their request for support will include talking
points, counter-arguments, and tips on composing such letters.
Somebody asked Larry Sullivan about the present behind-the-scenes
status of testing for No Child Left Behind, which generated a short
discussion about the difficulty of accurately testing students on
the autism spectrum.
On-line resource guide
The resource guide is online at the above link. Providers can add
to or correct the resource guide online themselves, and people can
rate the agencies.
4J Report by Larry Sullivan
Last academic year (’05–’06), 4J got additional
funding to pay teachers and consultants to attend trainings and
conferences on autism and Aspergers, including an Aspergers conference
in Sacramento with Tony Attwood.
This year (’06–’07), 4J started building trainings
for teachers and instructional aides.
Next year, they’ll be inviting Direction Service and other
local organizations serving students on the autism spectrum to train
staff to better serve these kids.
4J’s long-term program, called Shaping the Future, will address
the shrinkage of the 4J District. Special Ed is a high-profile concern
here. 4J will be focusing on integrating services for Special Ed
and general education. Meantime, the ranks of middle-school students
on the spectrum are swelling, so 4J has decided to add one .5 FTE
teacher to the staff of Spencer Butte, Cal Young and Kennedy middle
schools. These .5 FTEs would have no additional teaching responsibilities;
their job would be to check in periodically with a caseload of 15
or so students and help to transition them through various phases
of the school day.
4J also is expanding an autism friendly learning center with services
and support for kids on the spectrum. They are looking at adding
after-school programs for the tricky transition from school to home,
and are enlisting community partners for advice and help on this.
They also have added two state-of-the-art sensory rooms, at Holt
and Cesar Chavez. Pat Wigney suggested tours of various organizations
working with kids on the spectrum; Tim Mueller suggested an open
house of these sensory rooms.
There was a short discussion on the need for adaptive PE for middle-school
kids on the spectrum, with their coordination problems and difficulty
with team sports.
Computer classes by Lorraine Kerwood
NextStep Recycling started out as MacRenewal, which became Computer
Reuse and Recycling. Its new name includes recycling because they
recycle more than computers.
Next Step refurbishes computers to give to target populations, including
migrant farm workers, victims of domestic violence, and people with
disabilities. Another program allows people to do volunteer work
in exchange for a computer. The organization has 18 employees and
100 or so volunteers. They have given away 6,000-some computers
and recycled 800 or so tons of electronic waste. They also have
a low-cost thrift store. They are working on becoming a CRP (Community
Rehabilitation Project) and then a QRF (Qualified Rehab Facility),
employing people with disabilities. Nan suggested contracting through
OVRS (Oregon Vocational Rehab.).
They want to offer computer classes, but their insurance company
won’t insure a classroom situation, so they would like to
partner with an organization that could set up such a lab. Isabel
knows there’s a lot of grant money that could fund such a
lab.
Autism center in Lane County
Tim and Nan got a call from Anna Morrison, who said that former
mayor Jim Torrey has been working with a bank to disburse money
to spend on education in Lane County. She wants to direct some of
this money to the autism community. Tim is guessing it could amount
to a couple hundred thousand dollars. Jim Torrey is hoping to be
appointed to the Governor’s Task Force on Education, so our
group was thinking that an autism center would serve as a positive
contribution to his political future.
Mary Ann talked to him during Autism Speaks’ Walk-A-Thon this
fall, and found him to be interested and impressed by autism prevalence
statistics and other information on autism.
Since Jim Torrey is a business owner, Nan suggested that our proposal
sound as much as possible like a business plan.
The group discussed our vision of such a center. Wish list included
a multi-purpose meeting room for medium
as well as small meetings;
a socializing center for autists;
a peer-staffed drop-in center with professional support;
offices for professionals such as Nan;
spaces and practitioners for occupational therapy, physical therapy;
a medical clinic;
a space for RDI (Relationship Development Integration) therapy;
help with fitness, diet and nutrition;
legal aid (help with paperwork, housing, SSI);
studio-type kitchen for life skills classes;
other rooms for special interests (art, computer stuff, gaming,
etc.);
bus training; even drivers’ ed.
Nan said that her husband, a local dentist, is open to having
a dental chair at the center.
Larry Sullivan envisions a one-stop center.
Tim asked Cindy and Mary Ann how they
felt about educational money being diverted to such a community
center. Cindy said that it should focus on adults on the spectrum,
who are grotesquely underserved because most services end upon graduation
from high school or at age 21. She said that the community connection
is crucial and that the PASS Program would be glad to furnish practicum
students and even university students on the autism spectrum if
the program survives long enough to coexist with such a center.
Pat said that Bridgeway House is working with Willow Learning Center
and 4J in starting a school that blends “typical” kids
with kids on the spectrum. We extolled the benefits of such mainstreaming.
We discussed strategy on meeting with Jim Torrey. Tim suggested
emphasizing that this project could fill his needs as well as ours.
We need to find out who’s on the committee allocating these
funds with him.
We set up two committees: one to talk to Mr. Torrey and try to nail
down a time to take him to lunch (or something) for such a discussion;
one to write a proposal. At our meeting, we need to invite him to
various autism-related events/classes.
Tim and Nan to call Anna and find out how to get hold of Jim Torrey,
as a kind of heads-up that we’re going ahead with this. Mary-Minn,
Larry and Mary Ann to draft a short proposal for Jim Torrey about
our vision. Mary-Minn to draft it; Larry and Mary Ann to look over
the draft and suggest changes. Proposal to be ready in 2 weeks.
Janice to research other existing resource centers.
Mary-Minn, Nan and Tim to take Jim Torrey to lunch to discuss our
plan. Nan suggested we invite Jim to a meeting at 1 p.m. after Nan’s
support group on the first Saturday of the month. There, autists
could give heart-wrenching testimonials on the need for such a center.
Next meeting in four weeks, on
Monday, March 12, at Bridgeway House, from 6:30 to 8:30
p.m.
ASO-LCC Membership Meeting–
MINUTES – November 1, 2006
The Lane County Chapter of the Autism Society
of Oregon held a membership meeting Wednesday, November 1. I was
there, along with Pat Wigney (who had to unlock the door). Larry
was sick. That was it. So.
We talked a little about doing a joint fundraiser
with KindTree and Bridgeway House, but it was just talk. I mentioned
seeing a great event in Cincinnati that I’d like to
duplicate here. It seems a good fit for our community of the arts
and outdoors. Go
here for an article about the event in Cincinnati. Perhaps we
can talk about it more. Done right it could make a great fundraiser.
I’d like to schedule a meeting in early
February, maybe a Thursday this time – say Feb 1. What do
you say? Are you interested?
ASO-LCC
Membership Meeting– MINUTES – August 15, 2006
Attending:
Tim Mueller, KindTree, Genevieve Athens, President,
ASO, Larry Sullivan, 4-J, Pat Wigney, Bidgeway House, Chris Hays,
ASO-LCC, Kellie Hays, ASO-LCC,
others.
Web Site (Tim Mueller):
Tim provided the web site address (www.asolanecounty.org),
which is now up and running. There are four resources listed at
this point and he is looking for people to input additional resource
information. Pat said that she may have some volunteer help from
the U of O that could assist with the project. Resources can also
add graphics to their listing information.
4-J Report (Larry Sullivan):
Larry said that the city levy decision has resulted
in reduction of available funds. The district did get $25,000 last
year, which was used for sending teachers and others to training
specifically on special education issues. The plan is to have these
teachers come back to the districts and train others on what they
have learned. They are also planning on bringing some people in
for specific trainings. They hope to get this money again this coming
year.
The district currently services approximately
260 children. One of the districts priorities is to modify some
of the existing schools to be able to assist with case support.
About 80% of the current population being served is in a mixed general
education/special education curriculum. The district is trying to
get a consistent curriculum in place for both general education
and special education to make such transitions easier.
The district is also one of three locations
selected in the U.S. to receive a response intervention grant. The
grant was received in January 2006 and the project is being conducted
in partnership with the U of O. Educational Support Services (ESS)
is also seeking more money to provide educational information.
ASO state (Genevieve Athens):
There are currently eight chapters in Oregon,
including Lane County. The annual membership meeting will be held
in September, in which chapter representatives will set goals and
objectives for the coming year.
Debbie Coach is a chapter representative that
is working with the Oregon state legislature to address issues specific
to the membership. Anyone interested in participating is welcome,
especially those with prior experience in such matters. There are
currently no service issues on the table at this time. Potential
issues include housing for adults, mentoring, and services after
age 21.
On Saturday, September 30th, there will be a
seminar on Emotional, Behavioral & Medical Approaches for Family
Members. For more information you can visit www.oregonautism.org
or call (503) 636-1676.
In addition, on September 23rd, The Swindells
Center and the Northwest Autism Foundation will present, What’s
New in the Medical Basis and Treatment of Autism in Portland. This
presentation is for medical practitioners only and is not open to
families.
ASO is also working on getting out more posters
in pediatrician’s offices on recognizing the early signs of
autism.
Portland has started a Sib (sibling) Shop. Each
group has a maximum of approximately 12 children. They meet once
per month for about two hours. The program has gone over well and
they are looking to expand it in the future.
Jerry Newton and Terry Baker gave a workshop
on puberty last year that was well received. The next planned workshop
will be in 2007.
The combating autism passed the U.S. senate
and is currently in the House.
Autism Speaks Walk
The walk in Eugene is on September 10th and
the Portland walk is on September 9th. The currently need three
volunteers to staff the registration table. Check in is at 9:00
AM and the walk will take place between 10:00 AM and 12:00 PM (approximately).
Wal Mart said that they will donate hot dogs for the event, although
people will be needed to prepare them. They are also looking to
create a balloon arch for the event. Media and exhibitor table will
also be at the event. The web site is www.autismwalk.org/eugene.
Eugene Celebration (Tim Mueller):
Bidgeway House will have a float in the parade
along with having a table at the event. The float and walk will
take place on Saturday, September 9th. Everyone is welcome to participate.
Fall & Winter Events (various):
Lane Amateur Hockey Association’s
Special Hockey program will be starting on Sunday, September
17th. Practices are on Sundays from 11:00 AM to 12:00 PM. For more
information contact Chris or Kellie Hays at (541) 342-4297.
KindTree’s annual retreat is
next weekend. They currently have approximately 114 signed up and
capacity is limited to 120. All of the cabins have been booked,
but there are some campsites still available.
Pat Wigney offered to allow ASO-LCC to participate
in its childcare fundraising nights.
The next meeting is scheduled for Wednesday, November 1st.
May
23, 2006 meeting of the ASO-LCC leadership group.
Attending: Tim Mueller, KindTree; Larry Sullivan,
4-J; Chris Hays, ASO-LCC; Pat Wigney, Bridgeway House; Teri Baker,
Autism Speaks; and Linda Cochran.
4-J Report. Larry Sullivan
There are presently 260 students on the spectrum
with current IEP’s in place. Larry’s district has about
30 teachers so far who have taken a 4-J professional development
course to help them provide appropriate services to students on
the autism spectrum, with more training to come in the fall, including
planned guest speakers. There is a focus to develop “autism
friendly buildings” within 4-j that concentrate staff with
special training to build an understanding and productive environment.
Cal Young school is the focus at this time, with staff developing
a virtual case management style model.
Larry also spoke of a recent court decision
that prevents the district from implementing an after school program
for kids on the spectrum. The plan was an after school “bridge
to home” that could function as a winding down place. The
$30,000 funding in place for this program fell away when a lawsuit
successfully argued that the district created the levy that funded
the program (and others) illegally. The superintendent of schools
has the power to refund the program out of general funds. All present
voted to send a letter to the superintendent encouraging them to
refund the program. Larry will write the letter and we will review
before signing.
Website Report. Tim Mueller
We are up and running. www.asolanecounty.org
is online, with a home page, minutes of meetings page, and a membership
page. In addition, at a cost of $150, GreyWolf
Projects has installed a searchable resource database, accessible
by everyone. Everyone is invited, as well, to add your own resource.
Tim and an intern with Bridgeway House will enter 50 or so resources
developed by U of O students last spring to get us started. You
can follow this with an entry for your own organization, or of resources
you use and trust. GreyWolf Projects will screen all the entries
before they appear online. Once we have all the bugs out and a few
resources uploaded, we’ll send out a PSA to let the world
know. In the meantime, go ahead and check it out.
Many thanks to Dave Klindt at Willamette.net
for providing free web hosting for this site. Way to go, Dave.
Autism Speaks. Teri Baker.
Teri Baker is the parent of a daughter with
autism who passed away 18 months ago during a seizure. This heartbreaking
event helped convince her mother that more brain research was needed
to discover the cause and possible treatments for autism. This is
the mission of Autism
Speaks, now merged with NAAR. Autism Speaks is presently funding
51 different projects. As their local representative, Teri is organizing
a September 10th Autism Walk to raise money for autism research.
Walk teams are needed, as well as other support.
After much discussion, we resolved to support
and participate in this event, and help this organization raise
money. ASO-LCC representatives will be at the event, and will assist
the organizing committee. To join them, contact Teri Baker at: teribaker97436@yahoo.com
.
Teri also briefly mentioned the legislation,
Combat Autism bill, which is looking for co-sponsors in the U. S.
Congress. Commissioner Anna Morrison spoke of this bill at the KindTree
Autism Artism 2006 gala opening a few weeks ago. Read
more about this here.
Announcements
Nan Lester announced she is securing an office
at 28th and Oak for her consulting business. Visit Nan’s website
at www.nanlesterms.com
Chris Hays mentioned that his youth hockey league
is wrapping up, and that he and Kelly are open to other kids/family
ideas for fun this summer. Contact Chris at: chays@jrcpa.com
Our next leadership meeting is scheduled
for Tuesday, August 15, 6:30 – 8pm at Bridgeway
House. The agenda will include our participation in the Autism
Speaks Walk, and more. See you there.
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