ILRC Newsletter ~ 3rd Quarter 2003

The Independent Living Resource Center
a non-profit corporation of, by and for persons with disabilities
423 W. Victoria Street • Santa Barbara, CA 93101
(805) 963-0595 V/TTY • (805) 963-1350 Fax
www.ilrc-trico.org

July - September, 2003
Volume 14, No. 3
PUBLISHED FOUR TIMES ANNUALLY

Access Watch Comes to Town!
by Kathleen Riel, Project Manager
ILRC is proud to introduce our new ACCESS WATCH program, made possible through an advocacy grant. We are recruiting enthusiastic volunteers to participate in various community meetings to ensure accessibility is in all of our community plans.
We would like to have 10 volunteers in each of the tri-counties. Volunteers would be expected to choose a meeting that is of interest to them, and attend that meeting regularly. Then, report what they have learned to their local Systems Change Advocate. Some examples of meetings are Council Meetings, Planning Commissions, Transportation Committees, and Public Authority Commissions. ILRC will reimburse for travel costs, and the volunteer will receive a t-shirt and a badge.
This is great for people who want to get involved in their community! Please help spread the word to anyone that might be interested. Thanks!
For more information, contact Chera Minkler, Community & Systems Change Advocate/AT Information & Referral Advocate, ILRC’s Ventura office, 1802 Eastman Avenue, Suite 112, Ventura, CA 93003, (805) 650-5993, x202/Voice, (805) 650-0669/TTY, cminkler@ilrc-trico.org; or Marjorie Bastanchury, Systems Change/Advocate, ILRC’s San Luis Obispo office, 1150 Laurel Lane, Suite 134, San Luis Obispo, CA 93401, (805) 593-0667/Voice, (805) 593-0219/TTY, (805) 593-0671/Fax, mbastanchury@ilrc-trico.org.

ACCESS WATCH Volunteer Orientation
What is ACCESS WATCH?
The ACCESS WATCH Project is designed to educate and empower members of the community who are affected by physical and program access in their own communities. Whether it is the local market’s aisles that are too narrow for wheelchairs, not enough curb cuts around, or accessible parking spaces or a sign language interpreter, we need to do something about it and the best way to accomplish that is together.

Why do we need this?
The issues that people with disabilities alert us to the most are lack of affordable and accessible housing, communications access, accessible transportation, inadequate health care, and employment discrimination. Other problems are Education, in-home care and lack of access to public services. The only way to combat these problems is for as many of us as possible to get involved locally to influence policy makers. Call attention to what is not accessible and get them to do the right thing. ILRC Staff cannot be everywhere at once and policy makers pay much more attention to the citizens who are experiencing the problem.

Who or What do we Watch?
Our own city councils and boards of supervisors make decisions about our communities on a weekly basis. Do we know if they are making any decisions about us? We wont know unless we watch them and find out what issues of access they are discussing and deciding. Our communities also have local boards and commissions that make decisions about our health care, housing and transportation services. If there are concerns regarding access in the community that are not being ad-dressed, let’s get them on their agendas. Let’s make them accessible and responsive.

How do we start?
Decide which issue affects you the most. It could be housing, transportation, sign language interpreting, public access to buildings in your community, health care, etc. Once you have made a decision, we will help you participate by educating you on what to watch for and how to alert us to an access issue. You may wish to monitor your city council, architectural board or county board of supervisors meetings on the government access channel to learn how their meetings work and watch for items that may effect people with disabilities on their agendas. These entities often put together committees that require representatives of the community and will need someone from the disability community. You may want to volunteer on a transportation committee, housing board or the Public Authority (In-Home Care Network).

Getting Coordinated
The Systems Change Advocate will help you with information on your chosen access topic, help coordinate your meeting participation, provide you with bus tickets to the meetings in the community and help you fill out your Community Meeting Reporting forms. If you need and access accommodation at these meetings, look for the contact information on council, committee or board’s agenda. Request your sign language or other accommodation within the time frame they require.
ACCESS WATCH Volunteers may also join the Empowerment Team in their on a monthly basis to discuss their activities, get and give feedback and plan future activity. They are also welcome at ILRC’s board meetings.

Reporting Access Items of Concern
Once you are in place on a committee or watching City or County meetings, and you come across an access issue in discussions, please report it to the Systems Change Advocate in your area. The Systems Change Advocate will involve you in the strategy and process of ensuring that the council or committee hears the concerns of people with disabilities.

ACCESS WATCH Gear
We want these committees, Boards and Councils to know they are being watched. We want them to remember the needs of people with disabilities when they make their decisions. To ensure that, we will provide all the ACCESS WATCH volunteers with T-Shirts and badges. We also provide notetaking materials and supplies such as note pads, pens or recorders for those with difficulty writing because of their disability. Bus tickets for regular public or para-transit transportation will be provided to volunteers for traveling to and from their assigned council, board or committee meetings.

ACCESS WATCH Volunteer Community Report Forms
We need to keep track of the activities of this project and be able to document participation as well as track how you have made a difference in your community. We will provide you with these short, simple report forms to fill out each time you attend a meeting in the community, to be returned to the Systems Change Advocate on a monthly basis.
Thank you for making a difference in your community!

From the Desk of the Director:
Instead of waiting for the California State budget to pass, see how you can make a difference in your Community:

Join the ACCESS WATCH volunteers now!

Join the Independent Living Resource Center, Inc. in our mission to make our communities ACCESSIBLE for everyone.
We need YOU to help us WATCH:
Council Meetings
Planning Commissions
Transportation Committees
Public Authority Commissions
To ensure accessibility is being built into all plans for our communities, and IF Not, WHY Not!
Contact Chera Minkler, Systems Change Advocate in South Santa Barbara Co. & Ventura Co. at (805) 650-5993 Voice or (805) 650-0669 TTY
or
Marjorie Bastanchury, Systems Change Advocate for North Santa Barbara Co. & San Luis Obispo Co. at (805) 593-0667 Voice/TTY

Notes from Consumers to Patty Neumeyer
Hi Patty,
I am doing fine since I received my new wheelchair. I have been able to use the assistance of the wheelchair on many occasions inside the house. Because it is designed to fold up, I have been able to go with my friends in their car countless times outside of the home as well. I appreciate everything that we both went through to obtain it. It has been a relief to have this important piece of equipment in my life. It has given me a wonderful sense of independence once again. I am very glad that the ILRC was there to make it possible for me to get it. My quality of life has improved tremendously since getting this wheelchair. Thanks for everything.
Dody Woods

Hello Patty. I hope all’s going well for you. Thanks again for all your help and encouragement. The computer system I’m using was purchased with the financial assistance of the Santa Barbara News Press Fund and it is most wonderful. It allows me to type (as I am now in this note) and read on a daily basis. Once out of the question for a person like me without the use of hands, arms, legs, feet, etc. due to disease.
The computer system sits on a bed table. There’s a flexible arm that plugs into the computer with a plastic straw like device at the end. This device acts as the mouse and works with a keyboard shown on the computer screen. As I find letters on the keyboard, my mouth controls the mouse and the ‘click’ of the mouse is activated by a slight inhale or sip. The computer tries to guess words being typed so most words need only a letter or two typed in to the computer to type a full word. Quite remarkable. When you add this to the ability to read books and use the internet, you can see how much more is added to my life on a daily basis. I read several chapters in several books daily, news from many sources and much more.
My utmost gratitude goes to those at the Santa Barbara News Press Fund and those at the ILRC who helped make this possible. Thank you for helping just one person in need and making a difference. Bless you all and again THANK YOU VERY MUCH.
Mark

Calendar 2003
July
1 Canada Day
4 Independence Day – ILRC closed
30 - Aug 3 Fiesta in Santa Barbara
August
3 Friendship Day
9 International Indigenous People’s Day
26 ILRC Board Meeting – Ventura
September
1 Labor Day – ILRC closed
7 Grandparents Day
11 Patriot Day
17 Citizenship Day
23 First Day of Autumn
28 Rosh Hashanah Begins
21-27 National Flower Week
30 ILRC Board Meeting – Ventura

From Elizabeth Egenes :
The Santa Maria Valley Quilt Guild is going to be providing sign language access at their meetings. They meet the second Wednesday of the month at 9:30 a.m. at the St. Andrews Methodist Church, 3945 Bradley in Santa Maria. Surely it would be great for other Deaf women who enjoy sewing to attend. Their meetings are quite enjoyable and informative.

Study Announcement
If you are a wheelchair user who sits in your wheelchair while riding public buses, and you can complete a survey on the Internet or have a family member or personal assistant help you complete it, we have an opportunity for you! The University of Pittsburgh is investigating the real-world usage patterns of wheelchair transportation safety equipment on public buses, and we would like your input.
To participate in the study, you must:
Be eighteen years or older
Sit in your wheelchair while riding public buses
Have access to the Internet
Live in the United States of America
If you would like to participate or would like more information about this study, please point your browser to http://www.wheel-chairnet.org/survey/bus.html. (ILRC offices have a consumer computer you can use.)

SHHH and Coping
The Santa Barbara Chapter of Self Help for Hard of Hearing People meets monthly on the 4th Monday (except in July, August, and September). We are a support group for hard-of-hearing people. Anyone interested is welcome to attend. We meet from 2 to 4 PM at the Louise Lowry Davis Recreation Center, corner of De la Vina and Victoria Streets in Santa Barbara. For more information, phone (805) 967-5241 or (805) 969-4090.

ILRC sends our thanks to Wes Olsen of Santa Barbara, who donated $100.

From Brenda Tebbetts
The surf’s up and people are using the new accessible Beach Chair at Avila Beach. It is now available for people with disabilities to use for free. You can check it out at The Sea Barn across from the Pier. This is very exciting as it is the first time many people can get close to the ocean.

Transplant Support Group for Pre and Post Transplant Patients
Where: Hospice of Santa Barbara, Inc.
520 W. Junipero Street
Santa Barbara
Time: Fourth Wednesday of each month, 5:30 - 7:00 P.M.
For more information call (805) 563-8820 and ask for Joanne Talbot, MFT, RN.

From Chera Minkler
“The Independent Living Resource Center (ILRC) empowers people with disabilities to make choices in the way they live.”

Ventura Empowerment Meetings: July 16, August 13, September 10, October 8
Santa Barbara Empowerment Meetings: July 14, August 11, September 8, October 13

Legal Resource Center offers free assistance in Santa Barbara Co.
Housed inside the Superior Court law libraries of Santa Barbara and Santa Maria, the center offers a wealth of information on issues from evictions to small claims cases, adoptions to simple probate matters.
A joint project of the Superior Court, Santa Barbara Legal Aid Foundation and SB Co. Bar Foundation, assistance is available in Santa Barbara from 9 to 5 on Tues, Wed, and Thursday at the McMahon Law Library on the second floor of the County Courthouse. In Santa Maria, the center operates from 9 to noon and 1 to 5 Mondays and Fridays in the law library at 312 E. Cook St.
Consumers get help with paperwork and even advice on how to act in front of a judge. For more information call (805) 568-3303

IN MEMORY OF Orville Biggs Wallace, whose influence on Ruth Jackson guided her to be a rehab counselor and causes her to have a positive impact on the lives of people who are deaf. “The most beautiful roses have thorns. The secret is to be aware of the thorns, while focusing on the blossoms.”

My Trip to Sacramento
by Denise Martinez
In April I went on an exciting and wonderful trip to Sacramento. I went with a group called People First, which consists of a group of individuals with disabilities who are fighting for their rights. We participated in a rally, a march and talked to the legislators. Several people had many concerns regarding the State cutbacks in the budget. Mainly if the budget continues to decline there will be a loss or shortage of caregivers, day programs, medical benefits and the like. In my opinion, people will lose the most valuable thing they own which is their sense of independence. In the rally several people talked of these issues.
The same day, we all participated in a march to the Capitol. There were about 2,000 people involved. It was great to be a part of something so big. The march was peaceful, unlike the one on the other side of the Capitol. I believe we made a great impact. In fact, one of my girlfriends asked the officer standing by what he thought. He said, “This is the biggest rally I’ve ever seen and I’ve been here a long time.” This was definitely music to our ears! I think we made a little headway, and of course that was what we were there to do.
We then spoke to the legislators. It was awesome to speak to them, and they really listened to each and every one of us. We kept them well beyond the scheduled time.
What has become most important to me regarding these trips to Sacramento, is that I am a part of something that is extremely important. As a child, I was given help, but I feel that other people might not be as fortunate. So I have chosen to give back what I have been given several years ago and in the end I will see those results. What matters to me is that other people will receive care.

From BARRY GRIDLEY, Santa Barbara Office:
Back in March of this year a lady needing surgery but having no private medical insurance approached me. She was too young (in her fifties), apparently ineligible for MediCare or MediCal, and had no financial means to pay privately. She was in considerable pain, having a blocked artery leading from one of her legs to her heart. She had been told initially that the surgery required was relatively simple and would only cost a few hundred dollars. However, upon further investigation it was found that the operation would be more complex than first thought and that the actual cost would now be over $2,000.
I referred her to Sue Adams at the Saint Cecilia Society – an organization that often grants aid to individuals who need surgery but are, for one reason or another, unable to pay. After submitting the required paperwork from her doctor and writing a letter requesting help, I am happy to report this lady was able to receive the surgery she needed – paid in full by the Saint Cecilia Society – and is now fully recovered and able to work again.

A couple of weeks ago another woman I have advised and tried to encourage a number of times over a period of about a year (while never actually meeting her) finally came into the Santa Barbara Office to meet me personally and express her gratitude and appreciation for the help she credited ILRC with giving her over that period of time. When she started out she was newly in the City, close to being homeless, had numerous quite serious health problems and a small child to take care of. I am very happy to report that she now has her own apartment, is receiving proper medical care, is taking classes at UCSB, and has a good job as a student counselor. She is independent and looks like she’ll be staying that way. It would seem that sometimes we help people to a greater degree than we may realize. Even simple encouragement and a few kind words can go a long way to giving someone the desire to achieve success.

A Dream Come True
by Petra Lowen
When I started working at the ILRC (the first time, in 1983), one of my first consumers was a resident at Hillside House She was in her early 40’s at the time and had lived at the institution for over 30 years. Her dream was to some day move out and live in an apartment in the community. David Briggs and I provided independent living skills training. She came fairly close to fulfilling her dream several times but in the end it did not all come together.
In October 2002 I held an Olmstead Forum to get input from the community on what kind of services need to be expanded or created to enable individuals to move out of institutions or avoid being placed in one. The above-mentioned consumer was present and spoke about her dream to move out of Hillside House. She also displayed some of her paintings (over the past few years she had discovered that she is a talented artist). Shella DuMong from Chance, Inc was present at the Olmstead Forum, talked to the consumer and began to actively support her in her dream. To make a long story short: the consumer moved out of Hillside House on April 30, 2003 into a beautiful brand new, fully wheel-chair accessible apartment. After more than 50 years in the institution she fulfilled her dream and now lives on her own. The ILRC wishes her the very best and we congratulate her on never giving up. She is a perfect example of what the independent living movement is all about. All human beings, regardless of their disabilities have the right to live in the setting of their choice, to determine what they want to wear, eat, who they want working for them, what time they want to get up and go to sleep etc. We are proud of the accomplishments of this consumer and wish her many happy years in her apartment.

SLO’s EMPOWERMENT TEAM
What is it?
The empowerment team is a group of interested consumers and employees of the ILRC who want to help make changes in the local, state and federal system. We are interested in all legislation concerning the Disability Community and in influencing our local and state representatives to make our lives better.
Who is on the empowerment team?
Anyone who can volunteer their time, in any way, and wants to make a difference.

Where and When?
We will have meetings once a month, at the ILRC. The meeting will be on the first Monday of the month and will be at 2:30 pm in the ILRC office at 1150 Laurel Lane.
If you have email and are willing to be on a list-serve you will receive email from Marjorie about current issues and what to do about them. If you do not have access to e-mail, we will phone you about what is happening.
from Marjorie Bastanchury, Systems Change Advocate, (805) 593-0667
mbastanchury@ilrc-trico.org
1150 Laurel Lane, Suite 134, San Luis Obispo, CA

Wheelchair Accessible Transportation in Western Ventura County
July 2003
AMTRAK—1(800) USA-RAIL/www.amtrak.com
&Mac Service Area: USA
&Mac Reservations needed if stay-ing in wheelchair inside train.
&Mac Ask Amtrak personnel if ramp or other assistance is needed.
&Mac Strongly suggest using a “manned” station, if possible (the OTC).
GREYHOUND—1(800) 752-4841 ADA Request Line/www.greyhound.com
&Mac Service Area: USA
&Mac Must call AT LEAST 48 hours in advance to request accommodation (prefer seven days).
&Mac They will call back when your request is approved.
&Mac Arrive at terminal at least 45 minutes ahead of departure.
HARBOR BEACHES DIAL-A-RIDE—(805) 207-0699
&Mac Service Area: Limited areas of Oxnard & Port Hueneme
&Mac Transfers available at OTC.
&Mac Fare is $1.50.
&Mac Reduced fare ($.75) for those with a MediCare or ADA card.
&Mac Reservations strongly suggested.
METROLINK—1(800) 371-5465/www.metrolinktrains.com
&Mac Service Area: Ventura County & Southern California
&Mac Board at Oxnard Transportation Center.
&Mac Notify MetroLink Personnel if ramp or other assistance is needed.
&Mac No reservation needed.
&Mac Be at station at least 15 minutes before departure.
ROADRUNNER SHUTTLE—(805) 389-8196/www.rrshuttle.com
&Mac Service between Santa Barbara and Ventura Counties and major transportation centers (airports, train stations, cruise centers).
&Mac Ask for van #116 or #300—the TWO accessible vans.
&Mac I strongly suggest arriving at least one hour before you need to be there.
&Mac Major credit cards accepted.
&Mac Reservations REQUIRED.
SCAT—(805) 483-3959/www.scat.org
&Mac Service Area: Ventura, Oxnard, Port Hueneme, Ojai
&Mac All busses are wheelchair accessible.
&Mac Reduced fare (60 cents) for people over the age of 65 and those with a disability.
SCAT ACCESS—www.scat.org
&Mac Service Area: Ventura, Oxnard, Port Hueneme, Ojai
&Mac Must be certified to use this service.
&Mac Contact: Sue Munday at (805) 642-1591extension 114
&Mac Must make reservation the day before your trip—(805) 649-4421 or (805) 485-2319.
&Mac Fare is $1.50 each way.
&Mac Look in handbook for details
VCDS TRANSPORTATION SERVICE—(805) 986-5057
&Mac General transportation for Seniors and people with disabilities.
&Mac Service Area: All of Ventura County
&Mac Cost depends on distance traveled.
&Mac Good for traveling to UCLA Medical Center
&Mac Reservations strongly suggested
VISTA—1(800) 438-1112/www.goventura.org
&Mac Intercity service within Ventura County.
&Mac All busses are accessible.
&Mac Most fares 50 cents with ADA or MEDICARE card.
&Mac Shuttle service between Ventura and Santa Barbara ($2 fare, $1 fare with ADA or MEDICARE card).
If you need to use public transportation to travel in Ventura County or Southern California and have questions about your travel, call 1 (800) COMMUTE or 1 (800) 266-6883.

From Faith Strader
In our last Newsletter we highlighted the AYSO (American Youth Soccer Organization) VIP Program that is for players with disabilities. This is a picture from one of the games last season. The children (from the left: Anna Messier, Jacob Gold, Candace Vega, Max Gold, Justine Bellefeuille, J. C. Kendall and Kaitlyn Fitzgerald) shown in this picture with their Buddies are from the Under-14 division. The parents of children who played in the first VIP season are going to return this fall to play. Nancy Wood who had two boys on a team said, “The kids just loved it!”
The program is open to children ages 4 – 19 and all are encouraged to sign up. There is a separate line for VIP registration where Valerie Maloney, the VIP Director can answer questions and assist parents in registering their children. The Registration fee includes uniforms and team pictures.
As with any other team, coaching is from a parent or community volunteer. Focus is on having fun and developing soccer skills in a safe and nurturing environment. Emphasis will NOT be placed on winning or keeping score. Games have been scheduled for Saturdays at Storke Field, UCSB.
For current information, or if anyone is interested in volunteering to coach, be a “buddy,” referee, do Public Relations or assist in administering this pro-gram they can contact Valerie Maloney by email at schmals3@cox.net, or phone (805) 569-9626. The more help, the better the program!

ILRC Mission Statement
The Independent Living Resource Center, Inc., is an organization of, by and for persons with disabilities who reside or work in our service area. Our purpose is to assist and encourage individuals to achieve their optimal level of self-sufficiency while eliminating the architectural, communication and attitudinal barriers which prevent them from full participation in the community.

United Way Agency
Ventura County, Santa Barbara and Central Coast

Board of Directors
Michael Blaise, Ventura, President
Sue Andrews, Carpinteria, Vice President
Tina Pedotti, Santa Barbara, Secretary
Richard Donchak, Newbury Park, Treasurer
Sheila Blaise, Ventura, PR Chair
Irene Gonzalez, Ventura
Bernice Jacobson, Santa Maria
Edward Perry, Sr., Santa Maria

Locations and Staff
Santa Barbara Office
423 W. Victoria Street
Santa Barbara, CA 93101
Voice/TTY: (805) 963-0595
Fax: (805) 963-1350
TTY/TDD: (805) 963-8265
CAP Advocate (Toll Free): (888) 963-0595 V/TTY
Jo Black, Executive Director
Kathleen Riel, HR/Program Director
Jennifer Griffin, Business/Grants Mgr
Faith Strader, Full-Charge Bookkeeper
Carol Baizer, ILS/BPAO Prog Coord
Jennie Caldwell, Advocate/CA
Barry Gridley, Peer Support/Intakes
Frank Lindstrom, Accounting Cons
Petra Lowen, Personal Assistance/ Community Living
Ken McLellan, ILS/Peer Support for the Deaf
Patty Neumeyer, AT Program Coord
Rebecca Serpa, Admin Clerk
Kristin Watts, CAP Advocate
Nora Winger, Information & Referral

Ventura Office
1802 Eastman Av, Suite 112
Ventura, CA 93003
Voice/TTY: (805) 650-5993
Fax: (805) 650-9278
TTY/TDD: (805) 650-0669
BJ Legan-Adams, BPAO/Benefits
James Greer, Community Living
Christine Miko, Information & Referral
Christina Rahn, ILS/Peer Support for the Deaf
Chera Minkler, Systems Change/AT Advocate

North Santa Barbara Co. Office
327 E. Plaza Drive, Suite 3A
Santa Maria, CA 93454
Voice/TDD: (805) 925-0015
Fax: (805) 349-2416
Leeman Burke, I&R/Peer Support
Tina Burke, IL/Benefits
Candace Ridenour, Community Living

San Luis Obispo Office
1150 Laurel Lane #134
San Luis Obispo, CA 93401
Voice/TTD: (805) 593-0667
Fax: (805) 593-0671
TTY/TDD: (805) 593-0219
Mailing: P. O. Box 4310
San Luis Obispo, CA 93403
Marjie Bastanchury, Systems Change Advocate
Chris Bingaman, Community Living
Maria Gibson, Information & Referral
Denise Martinez, Peer Support/Intakes
Brenda Tebbetts, IL/BPAO

CCATC:
1150 Laurel Lane #132
San Luis Obispo, CA 93401
Voice: (805) 549-7420
Fax: (805) 549-7423
TTY: (805) 549-7424
Paul Mortola, Project Director
John Lee, Rehabilitation Eng.
Judi Kahrs, Services Coord
Robert Thompson, Vision Limited AT
© 2003

Schedule for ILRC Newsletter Submissions
Issue Deadline
October - December, 2003 September 1, 2003
January - March, 2004 December 1, 2003
April - June, 2004 March 1, 2004
July - September, 2004 June 1, 2004

Please send submissions (as MS Word attachments) to Jennifer Griffin at jgriffin@ilrc-trico.org, or mail to:
ILRC Newsletter Submissions
423 W. Victoria Street
Santa Barbara, CA 93101

General Information
Circulation Base: 2,600
Published four times yearly; mail submissions to ILRC NEWS-LETTER at Santa Barbara office or e-mail to jgriffin@ilrc-trico.org; deadline is the first day of the month prior to publication date. For more information, contact Jennifer at (805) 963-0595, extension 112. Submit articles as MS Word attachments to jgriffin@ilrc-trico.org.

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