ILRC Newsletter ~ 1st Quarter 2003

THE INDEPENDENT LIVING
RESOURCE CENTER
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

January - March 2003
Volume 14, No. 1
PUBLISHED FOUR TIMES ANNUALLY

Local AYSO Kicks Off Soccer Program for Players with Disabilities
Santa Barbara Region 122 of the American Youth Soccer Organization (AYSO) has added an adaptive soccer program for players with disabilities called the Very Important Player, or VIP, program.
The VIP League is for players age five and older who have a disability that would make it difficult for them to play successfully on a typical team. VIP started in October and just finished its first season in Santa Barbara. Ventura AYSO also has a VIP League. This league was created to allow all players to have an opportunity to play soccer at their own level.
The VIP teams are not limited to ambulatory players. Players using wheelchairs, walkers and other assistive devices are welcome to register. AYSO operates with the philosophy that “everyone plays,” meaning every player must play half of every game. The VIP program expands the philosophy to ensure that everyone has an opportunity to play soccer.
Teams are coached and refereed by parent or community volunteers, just as all AYSO teams are. A parent, or a designated parent, must attend all practices and games. “Buddies” will be assigned to players who will need assistance on the field. More Buddies are needed to volunteer for this league to make the program an even greater success. Coaches and Buddies will receive special training to help maximize the players’ success.
Teams will be formed based on size, ability levels and age. Rules will be modified accordingly to provide for a level playing field. Focus will be on having fun, first, and soccer skills development next, in a safe and nurturing environment. Emphasis will NOT be placed on winning or keeping score.
Signups for next year will be in May 2003. Games are held on Saturdays, beginning in Fall 2003. AYSO uniforms and team pictures are included in the $90.00 registration fee. Players provide own cleats and shin guards. Anyone is welcome to sign up!
For more information about registering for a team, or volunteering to be a Buddy, contact VIP Director Valerie Maloney by e-mail at schmals3@cox.net.
Fun will be had by all! Please watch the upcoming newsletters for more details on signing up.

From the Desk of the Director:
HAPPY NEW YEAR!
The lead article in this issue is a good example of community inclusion. Instead of making a segregated program, the AYSO programs decided to create a team of kids who have disabilities and provide the necessary accommodations for their participation. Then they play in an integrated league.
It is that spirit ILRC applauds and wants to extend. Kids going through school have enough opportunity to see themselves as ‘less than whole,’ and insignificant. If Special Education were handled the way GATE (Gifted and Talented Education) is handled, our children with disabilities would show us how truly special they all are. They don’t need to prove their value, but the community needs to be encouraged to see it.
The State Plan for Independent Living (SPIL), jointly created between the State Independent Living Council and the Department of Rehabilitation, targets youth for outreach and involvement in the Independent Living Movement. Independent Living Centers throughout the State of California are attempting to increase their contact with and services to young people with disabilities. Through school, students are and should be prepared to transition into the community life to jobs, higher education, indeed, anything they want to try for and achieve. Students with disabilities rarely are able to see themselves beyond dependency and therefore enter adult life poorly prepared for its responsibilities. Often they expect, and at the same time resist, continued dependency on family or institutional settings.
Growing within the State of California are organizations called Family Empowerment Centers (FECs). These organizations are parents and others helping parents with the job of advocating for their children and preparing them for adult life. While there is not yet an FEC in this area, ILRC does youth outreach, advocacy with and for parents and includes whenever possible young people with disabilities in our mission. We are growing tomorrow’s leaders and I want to see a substantial proportion of them as role models for generations to come.
– Jo Black

Notes from the Social Security Administration
Our New Social Security Number And Card Page
Helping you understand your Social Security number and card is the number one reason for the newest addition to our website. The Social Security Number and Card Page tells you everything you need to know about getting an original or replacement Social Security card, changing your name on your card and on Social Security’s records and getting numbers for your children. Find out what documents you will need to get a number and card and how to protect your Social Security number from identity theft. We even tell you what happens to your Social Security number after you die. When it comes to dealing with Social Security number and card information, this page puts all the cards on the table. http://www.ssa.gov/ssnumber/

We’re Accessible
It’s important for everyone to be able to get Social Security information from our website. That’s why we continually review our site and change pages to make them more accessible to people with disabilities. If you are blind, or if you use a screen reader, an assistive device or the keyboard to navigate the Internet, visit our accessibility page. The page offers navigational tips and information about screen readers, screen magnifiers, voice recognition and Social Security publications in Braille and on CDs and tapes. The information at the link below may be just the thing to help you get the information you need more easily. http://www.ssa.gov/accessibility.htm

Consumer Alert Issued By Federal Trade Commission
If you get a lot of E-mail, you probably know all too well that you can’t believe everything you read. Recently you may have seen an E-mail with wrong information. The E-mail says that the four major credit bureaus can give anyone your personal information — your credit report, mailing address, phone number, even your Social Security number. It then suggests to call and “opt out” to keep your information from being released. In response to this widely circulated E-mail, the Federal Trade Commission has issued a Consumer Alert with all the facts. If you want the real story, visit the link below. http://www.ftc.gov/bcp/conline/pubs/alerts/optalrt.htm

One Year Later
It’s been just over a year since the terrorist attacks on our nation in New York, Pennsylvania and Washington, D.C. While there is little that can comfort a person who has lost a loved one in such a tragic way, we at Social Security continue to help in every way we can. We were there from the beginning, helping those who needed our benefits.
There have been many moving stories about people directly affected by the attacks. One story is of a single mother who did not make it out of the World Trade Center, leaving behind a six-year-old daughter. Survivors’ benefits from Social Security have made it easier for her grandparents to care for her. Then there was the man with three children who thought he would have to sell his house to pay his bills after his wife died in the Pennsylvania plane crash. Survivors’ benefits for their kids helped him keep a roof over their heads. And we heard from the wife of a heroic firefighter whose life was taken by the collapse of one of the World Trade Center’s towers. She has been able to keep her family afloat with survivors’ benefits.
So far, nearly $31 million in benefits have been paid to more than 2,000 families affected by the terrorist attacks. We are proud to fulfill our mission and help families who lost loved ones in these disasters. That’s why we’re here — to make sure hard-working American families who earn Social Security benefits get those benefits in times of need. Social Security is an American cornerstone that cannot be destroyed by terrorists.
To learn more about how Social Security responded to September 11, visit our fact sheet at http://www.ssa.gov/pressoffice/Sept11Anniv.htm. To find out more about survivors benefits, visit our online publication at http://www.ssa.gov/pubs/10084.html.

Finishing Up Your Graduate, Doctoral Or Law Degree Soon?
The Presidential Management Intern Program was set up to attract graduate, doctoral and law students to federal service. Uncle Sam is looking for a few good students and recent graduates in a wide variety of academic disciplines. All cabinet departments and more than 50 federal agencies have intern positions. Applications must be submitted by October 31, 2002, by students who will complete all of their degree requirements before August 31, 2003. For more information about the Presidential Management Intern Program and Social Security, see the following website. http://www.ssa.gov/careers/pmi1.htm
For eligibility information and to find out how to apply, go to the following site. http://www.pmi.opm.gov/

Join The Hunt For Bowtie Man
We’ve got his picture, but we don’t know who he is. At the signing of the Social Security Act on August 14, 1935, there were a number of dignitaries on hand who were photographed with President Franklin D. Roosevelt. During the years, we have been able to identify all those in the photographs with the exception of one mysterious person — the one we call “Bowtie Man.” We think he was a member of Congress and was probably a member of one of the two committees with jurisdiction over Social Security legislation in 1935. There are five members of Congress who might have been present, and one of them might be our man. Can you identify Bowtie Man or rule out any of our five candidates? To provide clues or solve the mystery, visit Bowtie Man’s very own website. Watson, the game is afoot! http://www.ssa.gov/history/bowtieman.html

Have questions? Contact us at http://www.ssa.gov/reach.htm Interested in prior issues? Check out http://www.ssa.gov/enews/prior.htm Must subscribe? Surf on over to http://www.ssa.gov/enews/.

Calendar 2003
January
1 New Year’s Day (ILRC closed)
20 Martin Luther King, Jr. Day (ILRC closed)
28 ILRC Board Meeting – Santa Barbara
February
1 Chinese New Year
2 Groundhog Day
12 Lincoln’s Birthday
14 Valentine’s Day
17 Presidents Day (ILRC closed)
22 Washington’s Birthday
25 ILRC Board Meeting – Ventura
March
1 Islamic New Year
5 Ash Wednesday
8 International Women’s Day
17 St. Patrick’s Day
20 First Day of Spring/Vernal Equinox
25 ILRC Board Meeting – Santa Barbara (Annual Elections)
31 Cesar Chavez Day (ILRC closed)

From Maria Gibson
Ola mi nombre es Maria Gibson; Hello my name is Maria Gibson. I am the newest ILRC team member assigned to the San Luis Obispo Office. I assumed my position as the Information Referral Specialist on November 4, 2002. I’m getting settled in and already realized what a great organization I’ve joined. I expect to use my past experience working with Consumers with Disabilities, Seniors, Vendors and Government agencies, to expand ILRC’S outreach to the Hispanic Consumers and other members of the Community, with unmet needs. I look forward to working closely with each of you during the coming year.

Dear Friends:
Hello. My name is Susan Ayres. I am the new clerical assistant for the Client Assistant Program in the Santa Barbara Office. I left the land of eternal snow and freezing temperatures behind in 1980 to relocate here to beautiful Santa Barbara. I have never regretted this decision for even a moment.
Professionally I have worked for defense contractors, a flood control agency, attorneys, a federal housing lender, and the Social Security Administration.
My interests include reading, studying Spanish, playing with plants and being supervised by my delightful cat, Harry Tu-Tu.
I look forward to spending many years working here at ILRC, as everyone is genuinely friendly and helpful.

SLO Home Town Buffet To Add Two More Accessible Parking Spots - from Brenda Tebbetts and Marjorie Bastanchury
Soon there will be two more accessible parking spots in front of Home Town Buffet in San Luis Obispo thanks to SLOCOAccess, ILRC and Mark D. Potter Attorney at Law. Last year a consumer, who brought to our attention the fact that the local HomeTown Buffet was lacking in disabled spaces for their customers, approached us. We contacted Home Town Buffet and spoke to their representative but nothing came of it. We took on the developer and the city and talked to everyone involved but still received no solution. One day in the middle of our effort to bring about change we had a call from Mark Potter. He visited San Luis Obispo and met with the consumers and with us at ILRC. He agreed to take the case. WE WON!
If you have an accessibility complaint please call us at 805 593-0667, or you may call Mark D. Potter at The Center For Disability Access at 1-800-383-7027.

A calendar of events for the California Disability Community has been added to the CFILC website. Just Click on the link at http://www.cfilc.org to view the calendar. Want to add an event for your center or community? Simply click the plus (+) sign for the day of your event and complete the form in the pop-up window. Your event will be added to the calendar within 48 hours (slightly longer over the weekends). Use the calendar to get the word out about outreach, fundraising and other events sponsored by your center or associates.
The calendar is free and easy to use. You don’t have to be a CFILC member to post. No passwords or user names to remember (yet). For questions contact Allan M. Friedman, California Foundation for Independent Living Centers, Inc., allanm@cfilc.org.

Ventura Area Empowerment Team Meetings for 2003 will be held from 2:00 p.m. - 3:30 p.m. at the Ventura ILRC Office, 1802 Eastman Ave. #112, Ventura, CA 93003, on the following dates: January 8, February 12, March 12, April 16, May 14, June 11, July 16, August 13, September 10, October 8, November 12, December 10.
The meeting site is physically accessible. If any other accom-modations are needed, please contact the ILRC office at least a week in advance at (805) 650-5993 (Voice) or (805) 650-0669 (TTY).
In order to accommodate those with chemical sensitivity, please refrain from wearing scented products.

Santa Barbara Area Empowerment Team Meetings will be held 2:00 p.m. - 3:30 p.m. at the Community Room, 423 W. Victoria, Santa Barbara 93101, on the following 2003 dates: January 13, February 10, March 10, April 14, May 12, June 9, July 14, August 11, September 8, October 13, November 17, December 8.
The meeting site is physically accessible. If any other accommodations are needed, please contact the ILRC office at least a week in advance at (805) 963-0595 (V/ TTY) or (805) 963-8265 (TTY).
In order to accommodate those with chemical sensitivity, please refrain from wearing scented products.

At our recent annual Board and Staff retreat, one of the exercises the attendees did was a “role reversal,” where staff members acted as board members or consumers, and board members acted as staff or consumers. It was an interesting and useful exercise, giving us some insight into the integral role each of us plays in the ILRC.
And it made me start thinking: what do we as staff and board members think is the purpose of the ILRC?
I asked that question, and here are just a few of the answers I got:
- The ILRC provides the necessary information and/or services to individuals with disabilities to enable them to reach their highest potential.
- The ILRC empowers people with disabilties to make choices in the way they live.
- The ILRC helps people with disabilities help themselves to gain or regain their independence.
Pretty neat, huh? - Editor

ILRC’s Consumer Orientation
1. Who is eligible to receive services at ILRC?
Any individual with a disability that constitutes or results in substantial limitations to their independence and can benefit from our services.
2. What is the cost of services?
There is no charge to consumers for ILRC services; however, donations are appreciated. The ILRC is a private, non-profit organization which depends upon funding from State and Federal grants, United Way, local grants, fund raising and private donations.
3. What information does ILRC need?
Name, complete address, emergency contact, date of birth, nature of disability and head of household/income status. We need to know your needs, goals, and services you may want and how you want to change your life.
4. What services are available at ILRC?
a. Peer Support with staff who have personal experience with disability assist consumers in assessing and achieving personal goals related to independence such as adjustment to disability by consumer and/or family members.
b. Independent Living Skills instruction and training in the areas of utilizing community resources, survival skills, transportation options, advice to consumers regarding benefits programs and assistance in applying for them, and effective self-advocacy.
c. Information and Referral regarding services and issues related to disability to individuals and agencies in the community.
d. Individual and Systems Advocacy—We work with you to insure equal access to all available programs and services whenever there is an appearance of discrimination or lack of access due to their disability. Systems advocacy is provided on an ongoing basis to educate community members and groups regarding access needs and legislation for persons with disabilities. Consumers are encouraged to participate in systems change with their local Empowerment Teams lead by our Systems Change Advocate.
e. Personal Assistance Program—Staff assists consumers in assessing their personal care needs as well as providing instruction on the recruitment, hiring and management of personal care assistants as well as making referrals.
f. Sign Language Interpreting/Communications Services provide communication access for consumers with hearing or speech impairments through the use of sign language interpreters, oral interpreting, note taking and document translation.
g. Housing Assistance—Assistance in applying for low cost government housing certificates, housing seeking skills, home maintenance and modification information, and referrals are provided as available.
h. Community Education—We provide ongoing disability awareness to individuals and organizations in the community regarding issues related to persons with disabilities.
i. Assistive Technology—Specific information on Assistive Technology and adaptive aids are provided. Evaluations for Assistive Technology needs can also be provided by our Central Coast Assistive Technology project specialists.
j. Employment Assistance — Assistance in job seeking skills, mediation with employers on disability related or reasonable accommodation issues, referrals to support programs, referrals to employment resources as available.
5. Is it possible to request more than one service?
Yes you may request as many services as you feel necessary to achieve your independence goals.
6. How are services provided?
A consumer meets with a service provider for an initial interview. Goals are discussed. The service provider and consumer agree on a plan to accomplish the changes. Specific objectives are selected, timelines identified and responsibilities established for both consumer and service provider.
7. What are the rights of a consumer of services from ILRC?
Each consumer receiving services from ILRC staff has the following rights that include, but are not limited to:
• service without discrimination on the basis of race, religion, age, gender, national origin, sexual orientation, disability or any other basis prohibited by law.
• being treated with courtesy, dignity and respect.
• services provided without verbal (emotional), sexual or physical abuse.
• services delivered without coercion or sexual harassment.
• service delivered in as timely a manner as ILRC’s workload permits.
• full and complete explanations of all appropriate service options.
• the right to appeal any decision made on your behalf at ILRC.
• the right to terminate services with ILRC at any time.
• the right to view your individual service file record.
8. Consumer responsibilities include, but are not limited to:
• providing accurate, complete information for your independent living (IL) plan.
• following through with all specific objectives in the IL plan agreed to by you and the serviced provider.
• keeping your ILRC service provider informed of changes, i.e, address, phone number and other relevant personal information.
• demonstrating appropriate behavior at all times.
• scheduling appointments; drop-in consumers are not seen unless circumstances are extraordinary.
• appearing for all scheduled appointments or to cancel and reschedule at least 24 hours in advance when conflicts occur.
• treating ILRC staff with courtesy, dignity and respect; refraining from physical, sexual, or verbal (emotional) abuse and sexual harassment.
9. If a consumer is dissatisfied with a decision or feels that services were not provided appropriately, what is the appeal or complaint procedure?
ILRC has an internal complaint process by which a consumer can address inappropriate treatment or services. In addition, the Client Assistance Program (CAP) is available to address any problems or conflicts that cannot be satisfactorily resolved within the center. CAP contact information is provided in the description of the consumer appeal process attached hereto.
10. Confidentiality—No employee or volunteer of ILRC may give any information regarding a consumer to any person or organization unless written permission is given by the consumer. This written permission will be specified as to the type of information authorized by the consumer for provision to specific individuals or organizations and be time limited.

ILRC Consumer Appeal Process
1. When a consumer disagrees with a decision or feels that treatment has been unfair, that person may protest by first using the ILRC internal appeal process.
2. When using the internal appeal process, the consumer begins by explaining the protest to his/her service coordinator or, the supervisor, the Human Resources Director.
3. If satisfactory resolution is not achieved, the appeal is made in writing to the Executive Director. An appeal meeting is then set at a time convenient to the parties within two weeks or as soon thereafter as is practicable.
4. Following the meeting, the Executive Director will notify the consumer of the appeal decision in writing within five business days.
5. If the consumer is dissatisfied with the decision of the Executive Director s/he may appeal in writing to the ILRC Board of Directors. Upon receipt of the complaint, the President of the Board will schedule a meeting and will assign two or more director members to act as an appeal committee and to review the complaint. The committee will meet within the month they are in receipt of the complaint. The decision recommended by the committee will be presented to the full Board at the next regularly scheduled meeting.
6. Consumers may call the CAP (Client Assistance Program) Advocate at any time as well and can be working with them concurrently if so desired or to appeal a decision made by the ILRC. Contact the Client Assistance Program (CAP) representative at (888) 963-0595 v/tty. Calls can be made ‘collect’.
7. Appealing a decision shall not result in denial of future services or affect fair treatment of the consumer at ILRC.

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
Barbara Lynch, 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: (805) 963-8265
Jo Black, Executive Director
Kathleen Riel, HR/Program Director
Jennifer Griffin, Business/Grants Mgr
Faith Strader, Full-Charge Bookkeeper
Susan Ayres, CAP Assistant
Carol Baizer, IL/Benefits Program Coordinator
Barry Gridley, Peer Support
Frank Lindstrom, Accounting Cons
Petra Lowen, Personal Assistance
Ken McLellan, ILS/Peer Support for the Deaf
Patty Neumeyer, AT Program Coordinator
Curtis Sigoda, Advocate/Communications Assistance
Kristen Watts, CAP Advocate
Nora Winger, Information & Referral

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

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

San Luis Obispo Office
1150 Laurel Lane #134
San Luis Obispo, CA 93401
Voice: (805) 593-0667
Fax: (805) 593-0671
TTY: (805) 593-0219
Mailing: P. O. Box 4310
San Luis Obispo, CA 93403
Marjie Bastanchury, I&R/Site Coord
Maria Gibson, Information & Referral
Susan Stagg, Community Living/AT I&R
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 Coordinator
Robert Thompson, Vision Limited AT
© 2003

Will You Be Our Friend?
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Address
City, State, Zip
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Endowment $100+ Other
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I’d rather my gift not be mentioned in the Newsletter.
Thank you. Your donation is fully tax-deductible. A receipt will be mailed to you.

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

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.tri-co.org.

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