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
October - December, 2004
PUBLISHED FOUR TIMES ANNUALLY
Californians with Disability - Build a GOTV Campaign!
Participation in the political process by the members of a community is the foundation of our democracy. It the way we insure our civil rights, and guide our nation, state and local communities. It is the privilege of citizenship; to refuse to vote is to sacrifice our voice in governance. It is our individual responsibility as well as our right and EVERY election affects us individually is some way.
Get Out The Vote (“GOTV”) campaigns are designed to give as many people as possible the opportunity to vote and participate in the political process. Voting promotes inclusion, independence and community participation. A successful non-partisan voter campaign leads to increased voter registration, and the formation of a constituency that is knowledgeable about relevant policy issues, mobilized to get out the vote and educated enough to inform others.
The vision of the California Foundation for Independent Living Centers (CFILC) Systems Change Network is to motivate, inspire and activate the California disability community to become a strong political force through voter registration, education and grassroots organizing. As in other states, people with disabilities have not yet organized in an effective and unified way to influence political change. Legislators need to see us as a political voting block and that means power to bring in the votes for the issues and policies that effect us.
So, to that end, we are setting up a network of grassroots committees throughout the state to decrease and eliminate barriers to voting for people with disabilities, whether they are barriers of technology, communication access, or social participation.
We will provide broad-based, targeted and accessible voter education on both the voting process and on disability-relevant issues. Get involved, register, get your friends and families to register and VOTE!!!
From the Desk of the Director:
If you have any interest in working, you have a right to do so. Elsewhere in this newsletter is a description of the “Ticket-to-Work” program and its uses. While the intent is a good one, the implementation is flawed. The Employment Networks (EN) are at a huge disadvantage in providing services because of the time it takes to be reimbursed and to be paid for placements. The issue is Assistive Technology is also a huge barrier.
For those Social Security recipients who require a substantial investment in technology to accommodate them in a workplace or an interpreter during a training period, the EN can refuse service. That is in statute. Hence, the consumer with those needs is left with VR, which does not support the idea of choice. VR is also an EN and, while it may indeed be the best place for those with employment goals, choice and competition to improve service quality are the point behind the Ticket legislation.
If you have a question about the Ticket and your rights as to its use, please call the BPAO program representative in the ILRC office in your area. They can help you sort out the puzzle that is the “Ticket-to-Work.”
Did you know that:
· There are 54 million Americans with Disabilities?
· 35 million Americans with disabilities are of voting age?
· People with disabilities register to vote at a rate that is 16 percentage points lower than that of the general population?
· 16 million people with disabilities across the country are not registered to vote that could be?
· A lower percentage of people with disabilities vote than in any other reported group?
Accessible Curves for Women®
by Patty Neumeyer
Curves for Women®, an international fitness gym, is beginning negotiations about how to become more accessible to women with disabilities. I am blind, and have been an active member at Curves for the past nine months. I am reporting on how Curves accommodated my guide dog and me.
On my first visit, the staff member readily made an appointment to assist me in completing the application form and give me a tour of the facility. She allowed me to come in before they opened for a private training to give me extra time to acclimate myself to the equipment. They said my guide dog could stay behind the front counter, where she could sleep quietly while I worked out. I had one week to use the gym for free before deciding whether I wished to become a member. I held my white cane in one hand to locate the next equipment station. As I worked out in the “circuit,” so called because all the exercise stations are arranged in a big circle, I became more comfortable with the sequence, the positive attitudes of the staff and fellow members at Curves. When I approached a staff member about writing this article, she was enthusiastic, and told me that my name had come up at staff meetings because I had learned how to use the equipment quickly and successfully. She also said that her boss was very interested in learning about how to serve more women, especially those who may be hesitant to join a gym for whatever reason. We discussed ways to make the facility more physically accessible, such as installing a flashing light to visually indicate to a deaf member the 30-second intervals when everyone moves to the next equipment station. She mentioned that those individuals who needed extra time to move from station to station could possibly arrange to come during the late morning hours, when very few patrons are present. We also talked about spatial clearance for a member’s wheelchair, a storage area for it while she was in the circuit, and the possibility of a member bringing her own personal assistant for the purpose of facilitating her in the circuit at no additional charge. I gave her my business card, and asked her to have her boss contact the ILRC to discuss accessibility issues at Curves for Women.®
From Chera Minkler
As many of you know, I will be working on getting out the vote (“GOTV”) until the election in November. I found a list of web sites at www.thenthdegree.com, and I thought they might be of interest to you. Check out the sites!
For more on issues important to voters with disabilities: AAPD’s Disability Vote Project; NOD’s Get Out The Vote Page; NOD’s Brewster Thackery’s Excellent Essay on the Power of the Disability Vote.
If you care about disability issues, vote on Tuesday, November 2nd.
Another Round...
Did You Get A “Ticket To Work” from Social Security?
A “Ticket,” under the Ticket to Work and Self-Sufficiency Program, is a document that provides evidence of the Social Security Administration’s (“SSA’s”) agreement to pay the Employment Network (“EN”)/State Vocational Rehabilitation (“VR”) agencies that have provided employment services, vocational rehabilitation services, and other support services to a beneficiary who has assigned them their Ticket.
The Ticket looks similar to a certificate. It is a red, white and blue document approximately 6” by 9” in size. The left side of the document includes the beneficiary’s name, ticket number, claim number, and the date that SSA issued the ticket. The Ticket number is the beneficiary’s Social Security number, followed by the letters “TW” and a number (1, 2, etc.) to indicate how many tickets the beneficiary has received to date. The right side of the Ticket includes the signature of the Commissioner of Social Security and language indicating that the SSA issued the Ticket.
In a new cycle, SSA will distribute the Tickets in graduated phases throughout states selected by the Commissioner of the Social Security Administration. The next phase-in period consists of a three-year implementation. Tickets for the first thirteen states will be mailed in February 2005; the second phase, twenty states and the District of Columbia, will be mailed in the fall/winter of 2005; and the third phase, the remaining seventeen states and American Territories, will be mailed within the twelve months following the second phase. Tickets are mailed to eligible beneficiaries who may then assign them to the EN or State VR agency of their choice.
Georgia Tech’s Center for Assistive Technology and Environmental Access (“CATEA”) is recruiting people with disabilities to participate in a series of projects that are being conducted at Georgia Tech. CATEA’s Rehabilitation Engineering Research Center (“RERC”) on Workplace Accommodation is doing research about the barriers people with disabilities encounter in the workplace. We request that you join our consumer advisory network and participate in this survey. The purpose of this study is to make workplaces more accessible for people with disabilities. Your role is to provide us with information on your experiences in the workplace and your perspective on the accessibility of workplace products and services.
There is no direct benefit to you for participating in this study, but it will provide the RERC with valuable information that will be used to improve the accessibility of the workplace. The survey has 45 questions and takes about 30 minutes to complete. It asks questions about you and the nature of your disability. We are not asking about medical conditions, but about functional abilities such as seeing, hearing, moving and manipulating things. A number of questions are about functional limitations and the difficulties you encounter at work because of these limitations. Finally, we ask about accommodations you have received and those you have requested.
You begin the survey by using your computer to get on the Internet and go to our website: http://www.workplacererc.org/R1/CAN.php. This takes you to the sign up form for the Consumer Advisory Network. After you have filled out this form, click on the “Submit Form” button. This will take you to a consent form for the survey. It explains the purpose of the study, its benefits and risks. Please read the form completely. When you have read the consent form, click on the “I Consent” button at the bottom of the page. That will take you to the first page of the survey. We would appreciate it if you could take the survey as soon as possible.
If you have problems with the survey, please e-mail me at john.goldthwaite@catea.org, or call (404) 894-0563. Thanks very much for your valuable time.
Get Educated about the Presidential Candidates and Vote!
by Mike Ferriter, MSW
This year more than ever we need to vote! We can make a difference in the presidential election this coming fall. Those of us with disabilities are a large voting block. One out of five people in the United States has a disability.
Get educated on disability issues and policies of Republican President George Bush and Democratic presidential nominee John Kerry. What will they do for us in the four years ahead? To access their websites:
· Go to Republican President Bush’s official website at http://www.georgewbush.com, or by typing “Bush & Cheney 2004” in your search engine.
b. Click on “Health Care” at the top of the page.
c. Read the section titled “Created a Prescription Drug Benefit under Medicare.”
d. Read the section titled “Strengthened Medicaid and SCHIP.”
· Go to Democratic presidential nominee Kerry’s official website at http://johnkerry.com/index.html, or by typing “John Kerry and John Edwards” in your search engine.
f. Under “Get Informed” on the left side, click on “Communities.”
g. Click on “Americans With Disabilities for Kerry/Edwards.”
h. Under “Plan for America” on the left side, click on “Health Care. Review Health Care for All.”
i. Under the same section, click on “Education.” Scroll down to “Meet Our Responsibilities To Our Schools” and review “Ensure that No Child Left Behind works (etc.).”
j. Still under “Plan for America,” click on “Civil Rights.” Scroll down to “Ensure Equality For Americans With Disabilities.”
You will see how each side looks from our perspective. Get educated! Register and VOTE! We can have a large impact if we all vote!
Call your local town or city offices to find out about accessibility in voting places. Get an absentee ballot if the voting place is not accessible.
Contact me, if I can help, at mikeferriter@vzavenue.net.
Thank you Mid-State Bank Foundation!
The Mid-State Bank Foundation awarded the ILRC a $1,000 grant for the Community Living program in Santa Barbara.
Our special thanks to Jason Wilson, who got to know our organization and submitted the grant on our behalf. We appreciate everything you have done for us, Jason.
Guide Dog Denied Access to Butterfly Pavilion – And A Happy Ending!
by Patty Newmeyer
Recently, Brian Weber, the curator of the Butterfly Pavilion at the Santa Barbara Museum of Natural History, called the ILRC for some advice. (Mr. Weber receives the ILRC’s quarterly newsletter.) He reported that he had denied a blind patron’s guide dog access into the Butterfly Pavilion on the basis that the flea repellent used on the dog would poison the butterflies. He wished to know if he had done the right thing. He said that he provided alternate access, such as offering a staff member as a “sighted guide” (a fully sighted person to lead the blind patron safely around the Butterfly Pavilion) and an area where the guide dog could lie undisturbed until the handler’s return. I commended Mr. Weber for providing the blind visitor with the appropriate alternate access. Then I asked for documentation confirming the factual basis of his claim that the flea repellent was toxic to butterflies. He replied that it was common knowledge among Lepidopterists (scholars who study the field of Entomology, specializing in butterflies and moths).
I suggested that Mr. Weber obtain written documentation of this claim immediately. If indeed his facts are true, then the guide dog could be denied access to the Butterfly Pavilion under Title III of the Americans with Disabilities Act (ADA), which states that a public accommodation may deny equal access of providing such would involve a “fundamental alteration of the program.” That is, since the living butterflies are “the program” at the Butterfly Pavilion, allowing a toxic substance on the fur of a guide dog that kills the butterflies would fundamentally alter the program. However, without valid documentation, the museum would not have the right to deny equal access to a blind person’s preferred mode of travel.
At this writing, inquiries have not yet turned up any documentation either confirming or denying the claim about the toxicity of flea repellent to butterflies. Merial, the company that makes Frontline Topspot, the leading topical flea and tick repellent for dogs, reported that they have not conducted any tests to determine the toxicity of their product on butterflies. They asserted that, if a butterfly were to land on the dog’s fur immediately after the product had been applied, while it was still wet, it is likely that it would be toxic. However, as the product is designed to kill fleas and ticks that are in contact with the dog’s skin, and butterflies would only be likely to land on the outside of the dog’s coat, the probability of a butterfly being poisoned by a dog on which the product had been applied more than 24 hours previous is extremely low. A call to the veterinarian at Guide Dogs for the Blind, Inc. yielded only an educated guess as well. They conjectured that, if a repellent were strong enough to kill ticks, which are very hardy insects, it is possible that it would be toxic to butterflies, which are very delicate, sensitive creatures. An Internet search failed to illuminate the matter further.
Mr. Weber reported that he has also been unable to discover any evidence on the subject, and this has concluded that a butterfly being poisoned by flea repellent is an urban myth. He explained further that the life span of a butterfly is very short, and between ten and one hundred butterflies die daily inside the pavilion for various reasons. There is no evidence whether persons wearing mosquito repellent on their skin has any effect on the butterfly attrition rate. Visitors who fail to watch where they walk also step upon butterflies resting on the ground.
Mr. Weber reported that he is now allowing blind individuals and their guide dogs into the Butterfly Pavilion. He conveyed his appreciation of the ILRC for educating him about the law, and how best to apply it when making accommodations for guide dog users who visit the Museum of Natural History.
Successful Fundraisers
Thanks to all of you ILRC supporters for making your county’s fundraiser event successful. The money raised will go toward supporting the services provided in your local office. Please be on the lookout for date, time and place of your county’s next fundraiser!
Santa Barbara - $88.41; Ventura - $66.16; SLO - $390.00. Way to go SLO!!
Calendar 2004
October
11 Columbus Day Observed
15 First of Ramadan
16 National Boss Day
25 United Nations Day
26 ILRC Board meeting (Ventura)
31 Halloween
November
2 Election Day
11 Veterans Day (ILRC closed)
25 Thanksgiving (ILRC closed)
26 ILRC closed
30 ILRC Board meeting (Santa Barbara)
December
7 Pearl Harbor Remembrance Day
7 Hanukkah begins at sundown
8 Hanukkah
21 Winter begins
25 Christmas
26 Kwanzaa begins
31 New Year’s Eve
New Wheels for Connor: A Success Story
by Mary Biggerstaff
Connor was diagnosed with Leigh’s Disease, a mitochondrial disorder, at 19 months of age. This is a degenerative neurological disorder. The doctors predicted that Connor would not live to see his 6th birthday. Connor just turned 11 and began middle school in mainstream sixth grade classes. He has a full time aide at school, because he is quite affected physically by his disease. His motor skills are severely compromised. He cannot walk, and his fine motor skills are poor. He is also legally blind.
Connor was in a manual wheelchair (the same one) for six years. He received a new power chair earlier this year. When he had his manual chair, we transferred Connor into the car and then loaded his chair in the back. As soon as his power chair was ordered, we sold out car and bought a used van to accommodate his new “wheels.” The car needed a power lift, wheelchair tie-downs, and a raised roof. Since medical insurance does not cover transportation needs, we searched at length for funding, as the van modifications turned out to cost more than the van itself! We were denied in all our requests for financial assistance, until we found our way to ILRC.
Chera Minkler was our point of contact in the Ventura office. From there we were connected with Patty Neumeyer in Santa Barbara. After hearing our story, she searched until she found a funding source that ILRC had not previously used. It is described as a “last resort,” and is used as just that, when all else fails. Patty helped us tremendously in getting the paperwork done, our appeal letter completed, and all of it submitted on time for the next meeting of the funding committee. We were most pleasantly surprised and extremely thankful when we were awarded the total amount of our request!
When we were getting bids for the modifications, Patty recommended Adaptive Driving Systems in San Luis Obispo. Happily, they had the best price and most definitely the best service! Jeri is the contact person in their office, and she was most helpful and thorough. We had a great experience with them and would recommend them highly!
Not only have these van modifications enabled Connor to travel more safely and securely, they have aided in his transitioning from elementary to middle school. Connor can get in and out of the van by himself, thus becoming the independent young man he strives to be.
Our sincere thanks go out to everyone involved in this process. Your efforts have made so much possible for Connor!
by Angela Johns
Before I got this deadly disease, I was the Mom in the neighborhood that would put together the before-school-year party and the after-school summer parties. I worked with law enforcement on catching predators on the Internet and bringing them to justice. On my wall is a framed photograph of me with Vice President Dick Cheney, who honored me for my work. I will never forget the day that my hips locked up on me and I couldn’t walk. I was very scared because I had two boys to raise and didn’t know how I was going to do it. I was diagnosed in July 2002 with the worst kind of Lupus you could have. SEL Lupus attacks the vital organ systems and all muscles and bones. I have total osteoporosis in my hips and spine. This year I decided to have chemotherapy as a last resort. If the chemo doesn’t work, I will have no immune system – ever. I don’t have one now, so I work from home on computer.
I work for Angels Blue Casa Communications. When I went to work with Blue Casa, it was a vision, and now we are a real company – a Public Utility. I used to work 12-16 hour days with no problem – I’m a Type-A personality and a Sicilian on top of that, and we don’t ever slow down. When I was diagnosed, I was scared like anyone at first, and wondered what to do. That is when I started to find out about help I could receive through organizations like the ILRC. I was not going to let my fear take me down – not when I had two boys depending on my to raise them and be there for them. They are very strong young men at 14 and 15 years of age, and their plates are full. So, when I can sleep, work from bed, and not in constant pain, it’s easier on them because they don’t worry as much about what to do for Mom.
I found out about the ILRC from my sister, who works for the Santa Barbara Health Authority. She told me to call Petra Lowen, the Community Living Advocate. Petra came all the way to my home to help me with a Section 8 housing issue. I was so impressed by her thoughtfulness! Patty Neumeyer also helped me get funding assistance for a 3” thick mattress pad for my bed from the Saint Cecelia Society (“SCS”). The kind people from SCS came to my house and helped me put in on my bed and, for the first time in more than two years, I slept pain free! I could not believe it in the morning!
The ILRC is the best organization in the city for people with disabilities like myself. My doctor told me that I have about two years to live, and I won’t see my youngest graduate from high school. But I fight every day to make a liar of him. I spend 90% of my life in bed, the other 10% picking up work and going to chemotherapy or doctors’ offices; so receiving the help from ILRC and SCS has been a big blessing for me.
We need more organizations like the ILRC to help people with disabilities find the resources we need. Petra helped me to be put on the Section 8 housing list. I have been sleeping pain-free since Patty helped me get my new mattress pad, for which I thank them. I now know that the ILRC is there to help me – to help myself.
Board of Directors
Michael Blaise, Ventura, President
Sue Andrews, Carpinteria, Vice President
Anna “Tina” Pedotti, Santa Barbara, Secretary
Richard Donchak, Newbury Park, Treasurer
Sheila Blaise, Ventura, PR Chair
Marjorie Bastanchury, Santa Barbara
Irene Gonzalez, Ventura
Edward Perry, Sr., Santa Maria
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
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
Carol Baizer, ILS/BPAO Prog Coord
Jennie Caldwell, Advocate/Interpreter Registry Coordinator
Diane Esparza, Bilingual I&R/Outreach
Bernie Faulkner, Bookkeeper
Barry Gridley, Peer Support/Intake
Frank Lindstrom, Accounting Cons
Petra Lowen, Community Living
Ken McLellan, ILS/Peer Support for the Deaf
Patty Neumeyer, AT Program Coord
Rabecca Serpa, Admin/CAP/Acctg Clerk
Kristin Watts, CAP Advocate
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
Andrea Mendoza, Information & Referral
Chera Minkler, Systems Change Advocate
Christina Rahn, ILS/Peer Support for the Deaf
Gabriela Rios, Outreach/Community Living 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
Candace Ridenour, Community Living/ I&R/BPAO Specialist
San Luis Obispo Office & CCATC
1150 Laurel Lane #184
San Luis Obispo, CA 93401
Voice/TTD: (805) 593-0667
Fax: (805) 549-7423
TTY/TDD: (805) 549-7424
Denise Martinez, Peer Support Advocate
Karen “Cary” McGill, AT Advocate
Maria “Lisa” Rubio, Information & Referral
Debra Souza, Community/Independent Living
StevenYoung, BPAO Specialist
CCATC:
Voice/TTY: (805) 549-7420
Paul Mortola, Project Coordinator/ Rehabilitation Engineer
Judi Kahrs, Services Coord
John Lee, Rehabilitation Eng.
© 2004
END
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