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

November 7, 2007 ASO-LCC meeting notes:

Present: Larry Sullivan, Tim Mueller, Eva Lamar.

Announcements:

  1. 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.
  2. 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.
  3. >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.
  4. 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:

  1. 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.
  2. 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.
  3. >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.
  4. Larry volunteered to help this program financially in some way I don’t remember. What were you suggesting, Larry?
  5. 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:

  1. 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.
  2. Kids with PDD, bi-polar and more also experience significant prescription rates.
  3. Larry and Eva both replied that early diagnosis is key for maximum future development.
  4. It was also noted that cultural differences can unduly delay diagnosis.
  5. County is doing a good job of accurately diagnosis kids with autism.
  6. Mirror-neurons were discussed. Eva will be sending something about that.

Autism Community Center:

We brainstormed some possibilities:

  1. Possibly use the 4-J Pathfinder building for organizing after-school activities.
  2. Also maybe Bailey Hill School, where many rooms might be available for community activities, though non-students would have to be background checked.
  3. Is NextStep still looking for community partners to set up a computer training classroom? Tim will find out.
  4. 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.
  5. 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)
  6. Eva will talk to U of O folks about how they could participate in a center.
  7. 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.


Contact Information:

Chapter Representatives:
Mary-Minn Sirag 541.689.2228
Tim Mueller  541.521.7208

Resources:
Patricia Wigney
(children - new diagnosis)
Bridgeway House (541)345-0805 www.bridgewayhouse.org

Kellie Hays
(kids / family activity committee)
KMHays@aol.com

Mary-Minn Sirag
(adult issues)
KindTree Productions (541)689-2228 sirag@mindspring.com

Tim Mueller
(recreational - art - computer resources) KindTree Productions (541)521-7208 tim@kindtree.org www.kindtree.org

Nan Lester
(Asperger - school issues)
Asperger Advocacy Coalition
(541)345-8588 AAC webpage

ASO-LCC leadership meeting notes
March 21, 2006 6:30 PM Bridgeway House

Attending: Tim Mueller, Chris Hays, Larry Sullivan, Marietta Van Eekeren, Dawn Stahlberg, Patricia Wigney, Alison Miller, Nan Lester, and Betsy LaCroix.

Resource Guide:

Tim brought the group up to date. He has about 50 local resources gathered by Cindy Herr’s class last spring, plus another bunch on the KindTree website link pages. Attempts to create a data base of these resources that would print to a yellow pages type format have been unsuccessful – ‘cause Tim doesn’t know how. In the search for help with that he came across a software solution that can display the info online in a searchable format with customizable categories and unlimited entries that could be made by an “authorized“ person or just anyone who wanted to add a resource. There are other options as well, including accepting advertising. (See description below.) To create a printable document with these resources is another issue – possible, but Tim still is not sure how to do it.

We discussed the purpose of the guide. All agreed it was to provide accessible and locally specific resources to everyone. An event calendar was also viewed as important. Having a central place where people can go to find a comprehensive list of resources and events will benefit everyone in the autism community. A consensus emerged that an ASO-LCC website was needed to host this online guide and event calendar. It was suggested to inquire with Willamette.net for inkind hosting. They host Bridgeway House’s web site.

The software – MyDirectoryphp – installed costs $129.00. Suggestions were made to ask each ASO list member to contribute $5 or to ask providers listed to pay a small fee. Dawn expressed a willingness to help support the effort financially. The chapter has a cash balance of about $160. This issue was unresolved and will be discussed at the next meeting.

The software allows for reviews of services. Most people felt ASO should not utilize that option – instead should include an prominent online disclaimer noting we are not recommending or endorsing any product or service, just providing options for folks to consider.

We decided to secure the domain, [ASOlanecounty.org (or.com)], to find a place to host the site, create a web site, and purchase and install the software by the next meeting so we can then show it to everyone and begin adding data. Tim’s company, GreyWolf Projects, Inc. will be making this happen.

It was also mentioned to make an effort to keep the folks at U of O involved as they are a valuable partner.

Adult Activity Group:

Alison (amiller@directionservice.org) and Mary-Minn (not present) had a few outings last year, tapering off when the weather got cold. Along with Molly Elliot from the Hilyard Center are planning more events – a Leaburg area fishing trip in May, maybe a picnic in August. Please contact Alison if you are interested in supporting or participating.

Next Meeting:

We discussed scheduling regular meetings. There was a fair amount of groaning. But we did settle on Tuesday night, May 23rd, 6:30 at Bridgeway House for our next meeting. Mark your calendars.

Announcements:

Betsy LaCroix is considering a grant project for a peer mentoring program: people with autism helping each other. Please contact her if you are interested in this. 345-0132, betsylacroix@wingsspan.com

KindTree is celebrating Autism with an art show featuring a Gala Opening April 15th at DIVA downtown. The event is free from 4 – 8 pm, with special presentation at 6pm by Mayor Kitty Piercy, Commissioner Anna Morrison and SLUG Queen Slugnostra. Art work by a dozen autist artists is on display. The exhibition runs from April 3 – 30.

Software description:

phpMyDirectory is a professional, full-featured tool to create a fast, secure, and user-friendly business directory (Yellow Pages). It is self-administered and supports unlimited categories, trade leads with pictures and descriptions, banners and logos, paid memberships, ratings, maps, and many other features. It includes a full- featured administrative solution. Users can be charged for paid memberships using PayPal IPN or the Authorize.net AIM feature. http://freshmeat.net/projects/phpmydirectory/

submitted by Tim Mueller

 

ASO-LCC General Meeting, 9/28/2005

On Wednesday, September 28, our regional chapter of the ASO held a general meeting. Attending were Tim Mueller, Mary-Minn Sirag and Larry Sullivan. We decided we were the most important people in the organization and proceeded to divide up the treasury.
Just kidding.
But actually, we were the only people there, and here are notes from that meeting.

Mary-Minn reported on the State chapter representative’s meeting earlier in the month. Generally, her report indicated we have more events, trainings and supports here than any other part of the state. We are doing well as an autism community. ASO-LCC is just a small part of that. One item she mentioned that was happening in the Medford area, I think, was an informational display in a local store. That was interesting to us, and we hoped someone would be interested in coordinating such a display. How about you?

This led to a discussion of developing political action and lobbying techniques in the autism community. Larry has some experience in that field, and will be offering some leadership – maybe even a training session – on this issue. Interested? Stay tuned.

Since Kelly wasn’t able to attend, (she is the committee person) we tabled discussion of kids’ activities after mentioning some possibilities:
Reserving the Science Factory for an afternoon or evening, costing about $250.
A group outing to a movie at the budget theater in Gateway.
Reserving the roller rink for a group outing, cost unknown.
Sponsoring a Boy Scout den or troop or whatever it is. The Scouts are eager to help us with this one.

Mary-Minn mentioned that her adult activity group was going dormant for awhile due to lack of participation.

The next agenda item was the Resource Guide. Over the summer Tim received over 50 entries for this guide from Cynthia Herr and her students. A few more names came up at the meeting. We discussed organization and categorizing of this information for the guide. What was presented, plus the additions from the meeting, are printed below. Please take a look and add what you think is missing. You could also send the resources you are personally aware of – doctors, diagnosticians, counselors, autism friendly public spaces, whatever. Only you know where you go and what you use to help. Share it with us. Just reply to this e-mail with your additions.
Also under consideration for inclusion are recipes, autism anecdotes, advertisements, images…
Tim indicated he will need help to keep this project going. Please contact him if you can help solicit advertisers, enter data, help categorize and organize the data, etc. He will collect data until the end of the year, and try to get it put together by March, with unveiling in April. This will be a good resource, with your help. Tim’s contact info is below.
We also discussed a draft of the cover graphics. We’ll keep working on it.

Last on the agenda was “Endorsement of area activities and events”. One of the reasons for establishing this chapter was to assist in spreading the word about other autism organization’s activities. Endorsing organizations and their events could be a way to accomplish this. This was tabled after a brief discussion, hoping for more input before moving on this. Genevieve Athens will be consulted, as well. We’ll talk more next time.

That was it. The next meeting was not scheduled, though it is likely in January. Hopefully we’ll find a time when more people can attend.


Autism Community Calendar 

Resource Guide Catagories and Formating Options:

 

Catagories:

Diagnosis help - child AND adult
Recreation
Vocational Programs
Support Groups
Physicians
Dentists
Schools
Educational Support
Education
Advocacy
Training
Therapists – mental health, others?
Child Development
Consultants
Treatment
Government Agencies
Housing – autism friendly places
Housing assistance agencies
Foster Care Providers / resources
Group homes
Research
Transportation
Computer Help
Art Programs
Barbers / Hairdressers
Safe Community Locations
Restaurants (menu & behavior)
Respite Care
Employment Agencies
Disability legal assistance – Attorneys, etc
Foundations
Non-profits

Format:

3 separate sections of the guide, including:

1. Categories listed alphabetically
List entries by categories
Some may fit in more than one category
Include brief description and contact info with each.
This section is like the Yellow pages

2. Include each entry’s info sheet, if available.
List entries alphabetically

3. In the back, alphabetic index of all entries, with URL


Estimate first edition running just under 50 pages

Options:

Include photos of certain events or places or people

Solicit advertising (maybe just the back page)

Include recipes (gluten free?)

Include stories (news, personal, informational) space permitting

List contact names alphabetically somewhere?
especially specific people in larger organizations: schools, agencies, etc.

ASO Lane County Chapter Leadership Meeting
at Bridgeway House, 996 Jefferson Street, Eugene.
April 18, 2005 (Monday)
Action items' actors' names are emboldened.

Present: Tim Mueller, KindTree Productions; Pat Wigney, Bridgeway House; Mary-Minn Sirag, KindTree Productions, Bridgeway House; Alison Miller, Direction Service; Paul Bayley; Larry Sullivan, 4J School District; Chris and Kellie Hayes, parents; Mary Ann Messiers, Project PASS, U of Oregon; Cindy Herr, Project PASS, U of Oregon.

Notes by Mary-Minn Sirag

All present introduced themselves briefly.

1. We decided do adopt ASO's mission statement.

2. Response to ASO President, Genevieve Athens.
We decided to follow Genevieve Athens' suggestion in naming our chapter. It will be the ASO Lane County Chapter.

Nan Lester had asked Tim to design a logo. Genevieve liked neither our name Lane Autism Society of Oregon (LASO) or Tim's logo.

Nobody will be attending this Saturday's chapter meeting. We need a chapter representative.

Action item: All organizations to send Genevieve their mission statements.

We discussed why the three grassroots organizations (Asperger Advocacy Coalition, Bridgeway House and KindTree) are exclusively highlighted in the website verbiage, and decided to highlight not only these three organizations but all organizations involved (4J, Direction Service, Hilyard Community Center, U of O, and others that may join our force later). Tim to link their sites to ours, and eventually to the Autism Society websites (ASO and ASA).

3. Reports from Leadership Committees
3a. Parents and Caregivers, which was headed up by Dawn, who was unreachable, hence no meetings. Kellie to dog Dawn about it. Kellie to recruit parent committee recruits.

3b. Autists' Committee (Alison Miller). This committee, which has met twice, decided to focus on fun for adults 18 and over. Our survey of possible activities was answered only by Alison, Mary-Minn and Molly Elliott, so we decided to go ahead and come up with something simple and cheap. Alison passed around posters for our bowling fun this Thursday (4/21), at Cosmic Bowling at Strike City on Highway 99N (Gilbert Shopping Center), from 4 to 6 p.m. $1.50 per person per game.

The next activity will be fishing fun at Leaburg Reservoir on Monday (5/23) from 4 to 8 p.m.

People coming to these fun events can brainstorm other activities.

The Autists' Committee wants to focus on 18 and over, for the time being, leaving kids' fun to the Parents' and Caregivers' Committee. We also decided to keep the focus on out-and-about fun, though it may evolve into something else. This is not a skill-building group, just fun socializing.

We decided it would be better for this committee to organize kids' autie fun.

3c. Professional Development (Larry Sullivan). Larry and Nan Lester want to focus this committee on serving the mental health needs of kids 5-18. Nan is working on AAC's 5th annual conference. The October staff in-service turns out to conflict with the conference, so they are still tussling with scheduling.

Professional Development Committee to organize the second day, the breakout day.

3d. Treasurer's Report (Tim). $138 in our account anxiously awaiting our expenditure.

4. Project Reports.
4a. Communications and website (Tim Mueller). Kellie and Chris said they had been left off distribution list, and gave Tim their contact info.

Presently our ASO chapter's website is on KindTree's website. Tim to link big ASO website–and eventually ASA's–to KindTree's ASO Lane County Chapter (LCC) website.

All committee folks to send Tim their organizations' info. to update the website, as well as the ASA website.

Pat to look into get a low-cost web domain for ASO LCC.

4b. Recreation. See above 3b.

4c. Resource Guide (Cindy Herr). Resource guide is done! Tim will put it on the web, so that providers and professionals can download and print it themselves, as printing and binding are expensive (though perhaps our $138 could go toward printing and binding costs for a few looseleaf binders or somesuch). Mary-Minn will index it eventually, but it needs a table of contents first.

Mary-Minn had some more resources, but the PASS team is done, so those will go in a subsequent edition, when somebody has extra time to track down these entries' information. Cindy and Mary Ann will send Tim doc. files of the resource guide, as well as the research form that the PASS students used in compiling this information.

Chris and Kellie will research search engines for navigating the resource guide.

Pat to send Wendy Connelly's contact information to Cindy.

There are liability issues, especially in daycare and therapies. Alison Miller recommended folks needing this information to visit Lane Childcare website or call The Arc of Lane County for such referrals. Pat said that Bridgeway House has a private list of childcare folks. Does ASO have a lawyer who could suggest appropriate language for disclaimer about not endorsing the providers and services listed in the resource guide? Was anybody charged with researching this, asks the notetaker.

This meeting took longer than the requisite 1.5 hours, and Cindy requested that we observe the 1.5-hour time limit in the future, which was agreeable to all.

Adjourned at 8:45 p.m.

ASO – LCC Autism Committee Meeting Minutes

January 31, 2005
6:40pm - 8:10pm
 

People Present:
Larry Sullivan - 4J
Nan Lester - AAC
Tim Mueller – KindTree
Alicia Sweeney – Asperger Advocacy Coalition
Rich Coalman – CDRC
Wendy Connolly – Oregon Family Support Network
Susan Parks – Springfield School District
Allison Miller – Direction Services
Chris Hayes – parent
Mary Minn Sirag – KindTree
Patricia Wigney – Bridgeway House, parent
Kelly Harris – Student, Family and Human Services, UO
Cindy Herr – UO program PASS
Molly Elliot – Hilyard Community Center, Adaptive Recreation
Kristen Halgen – assistive technology, parent
Steve Tisinger – with aspergers support group
Molly Stelzl – with aspergers support group


 
What we are hear today to answer:


-What should membership look like?
-What’s our mission?
-   
Next meeting break into smaller group to create name and mission
-    
Mission Ex: make sure that families affected by autism and the professionals that help them know resources and how to obtain them
-    
Possibly create mini mission statements for each committee
 
Leadership Committees:
Committees develop own agenda then report back to the main group
1) Parent representation (care-giving roles)
2) People with autism
-   
Most important committee
-    
Group should have the most influence on what the goals of whole group are
-    
People with an without autism can be involved
-    
Facilitate people with autism
-    
People with autism need to speak up and be heard

3) Professional development
 

Cindy Herr
-    
Mary Ann Winters-Messiers
-    
Susan Parks
-    
Dawn Stahlberg
-    
Deb Eisert
-    
Molly Elliot, Hilyard Center-  
  
Lane County Mental Health
-    
Looking Glass
-    

McKenzie Personnel
-    
Lane Independent Living Alliance (LILA)
-    
EC Cares
-    
Issues that come up are cross disciplinary
-    
Physicians
-    
Psychiatrists
-    
ER people
-    
Law enforcement
-    

Trainings
-    
Assessing needs
-    
Educating colleagues
-    
Answer questions pertaining to needs
-    
Build relationships

SES 

  
 4) Fourth committee? Do we need one ex: communications?
-    
Communication between Bridgeway, KindTree, parents and people who have autism
 
Key Components committees need to work on:
1) Resource guide {ABOUT GOVERNMENT AGENCIES, INDEPENDENT SERVICE PROVIDERS, DOCTORS, DIAGNOSTICIANS, PSYCHOLOGISTS, TREATMENTS, AUTISM FRIENDLY EMPLOYERS, AUTISM-FRIENDLY HAIRDRESSERS, RECREATION PLACES (BOWLING ALLEYS AND SUCH)},
-   
Cindy Herr and Mary Ann Winter-Messier's Masters' students will obtain info from the community as a class project

2) Website
          -    Tim Mueller develop. 521-7208 to help…
-   
Used to find out what everyone is doing in the community and within their agencies
-    
Include an events calendar, list everything.
-    
One is set up through the state which includes invitation only and is not utilized much.
-    
A bulletin board that includes committee, agency and community info, events  and trainings
-    
Maintain bulletin and calendar info bi-monthly or monthly
-    
Create a link to resources and other relevant agency websites, or obtain URL and copy pertinent info from other sites and paste to new website
-    
Some people don’t have access to internet, so it would be a good idea to develop a newsletter or resource guide that can be distributed semi-annually
-    Might cost $50-150 per year, to help raise money. Can hold a fundraising event?

3) Recreation activities
-   
Includes activities we can create on our own such as picnics or bowling league
-    
Trainings that sensitize people who run programs of the existence and needs of children and adults who have special needs
-    
Evenings out for adults or kids; parents or siblings.
-    
Develop ways of teaching kids to help kids who have disabilities through exposure to people with disabilities
-    
Need to have FUN, feel safe and understood
-    
EX: OFSN has swim parties that include siblings
-    
(Inclusion is the largest barrier to success)
-    
Needs to be a team effort, partnering, networking and collaborating with parents
-    
Continuing theme is respite care, mentoring and buddy systems
-    
Creation of more opportunities
-    
Includes representation from KindTree

4) Respite/mentoring

5) Find doctors willing to participate and provide info
 
Membership Meetings:
-   
Monthly meetings? If people need monthly can refer them to a support group
-    
Quarterly meetings that entail reports from committees
 
Possibility to develop a clearing-house – Cindy Herr and Mary Ann Winters-Messiers could be in charge
 
Oregon Family Support Network – serves children with behavioral and mental health problems, includes support groups in Springfield, Eugene, Pleasant Hill and Oakridge
 
Creation of practicum experience:
-   
Can be made known through psychology, special education, early intervention, Family and Human Service majors at the U of O
 
The Lane - State resource guide
 

Bridgeway House: Find new ways and resources to deal with cultures and disabilities


 Spanish community support group for autism – obtain more info www.bridgewayhouse.org

Obtain info about people at last meeting and add to email distribution list


 
Upcoming Events:
-   
Saturday April 9th Mary Broadhurst, Special Education Attorney, free day long IEP workshop, also info about changes in the law since 1997 including legal rights, due process and mediation
 
-   
Sunday April 10th KindTree fundraiser, located at the Hilton Hotel, time: 12ish, includes silent auction. WAY FUN!!
 
-   
April 22nd Mary Ann Messier and Cindy Herr, workshop on Building IEPs, from 8:30am – 12pm
 
 

Next meeting at Autism Training and Support, CHANGED to Monday April 18 at Bridgeway House, 6:30 PM.

 
 
 
Kelly Ann Harris, Edited by Mary-Minn and Tim Mueller
ASO - LCC  

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