ILRC Newsletter ~ 4th Quarter 2002
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
NON-PROFIT ORG.
U. S. Postage
PAID
Santa Barbara, CA
Permit No. 243
Change Service Requested
October - December, 2002
Volume 13, No. 4
PUBLISHED FOUR TIMES ANNUALLY
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
Mike Rifkin, Ventura
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
(continued on page 6)
More Success Stories!
Your Vote Counts!
October 21 is the last day to register to vote for the November election. Registration forms are available at the post office, county registrar of voters, or may be completed online at www.ss.ca.gov/elections/ votereg1.html.
If you are unable to get to the polls on election day, register as an absentee voter . The deadline for registering as an absentee voter could be earlier than October 21. Contact your County Clerk-Recorder for timelines and details.
Remember: if you don’t vote, you lose your right to complain about our laws or governance!
Editor’s Note: We received such an overwhelming, positive response to “ILRC’s Successes” published in last quarter’s newsletter, that we decided to finish the year with all of the other success stories ILRC’s staff submitted. We hope you find them interesting, thought-provoking and inspirational.
Patty Neumeyer: Assistive Technology I&R - Santa Barbara
A senior was enjoying her new hearing aid, for which she had just paid $900.00 only three months ago. Then her 3-year-old grandson came for an extended visit with Grandma. She remembers taking the hearing-aid off when her grandson’s loud voice got to be too much for her. She isn’t exactly sure how she lost the hearing-aid, but she believes that she may have put it on to a TV tray at mealtime with her grandson, and it probably was thrown away.
After her small visitor went home, she really missed her hearing-aid. She missed the clarity of sound it provided, and how she didn’t have to ask people to repeat themselves when she wore it. However, she couldn’t afford to buy another one. Her daughter recommended that she call the ILRC. I was able to assist her in filling out an application for the News- Press Fund. She wrote her own personalized letter of explanation, which her daughter typed for her. She was able to pay 50% of the cost, and her funding request was granted. She now has her hearing aid back, and is enjoying life more fully again. She is also much more careful now about where she puts it when she takes it off.
VOTE VOTE VOTE VOTE VOTE VOTE VOTE VOTE
Page 2 October - December, 2002
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
Faith Strader, Bookkeeper
Jennifer Willer, Business/Grants Mgr
Carol Baizer, IL/Benefits Prog Coord
Barry Gridley, Peer Support
Frank Lindstrom, Accounting Cons
Laura Lippincott, Advocate/ Communications Assistance
Petra Lowen, Personal Assistance
Patty Neumeyer, AT Program Coord
Aurelia Wallace, Admin Clerk
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, I&R, AT I&R
Christina Rahn, Peer/ILS/CA
Chera Minkler, Systems Change 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
Sue Reese, Peer Support
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 Coord
Robert Thompson, Vision Limited AT
© 2002
From the Desk of the Director:
– Jo Black
What’s your vision?
ILRC is planning for our annual Board and staff retreat. This is the year in the cycle that we focus on IL philosophy and the organizational impact on the communities we serve. By the close of the day together, we will have formulated our organizational advocacy plan for the coming year(s).
In the recent past, we have conducted a number of forums to gather information from consumers about the services and equipment they need, use and prefer. Patty Neumeyer did a very successful Assistive Technology forum as the kick-off for our participation in the statewide AT research project.
By the time this is printed, two of the Olmstead forums will have been held. Candace Ridenour in Santa Maria and Suzi Stagg in the San Luis Obispo office are spearheading the effort to access community opinion. The deadline for completion has been extended to the end of October, and so we will possibly have a community meeting in Santa Barbara and Ventura in October.
Olmstead, as you may know, is the Federal decision focused on community-based, integrated living for persons with disabilities. It was the result of a court case brought in behalf of two women with developmental disabilities to enable them to live in a community setting instead of an institution. As a result of Olmstead, each state is required to develop a plan to implement this decision. California has not made much headway and is not gathering data from consumers about the content of its plan. If you are interested in having input to this process, call our office near you,
To successfully design and implement an advocacy plan for ILRC, we will be looking for consumer and community input. We want to continue to provide an arena where you can be heard, and service direction follows consumer ideals.
My vision is an integrated statewide network of advocates working for the barrier-free communities where they live. I see ILCs modeling access, promoting inclusion, and leading the way in a century where people with disabilities are valued and respected for what they can do.
October - December, 2002 Page 3
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Calendar 2002
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October
14 Columbus Day – ILRC open
21 Last day to register to vote
27 Daylight Savings Time Ends – Fall Back!
31 Halloween
November
2 ILRC Board & Staff Retreat
5 Election Day
11 Veteran’s Day – ILRC closed
28 & 29 Thanksgiving – ILRC closed
30 Hanukkah Begins
December
7 Pearl Harbor Day
21 Winter Solstice
24 Christmas Eve – ILRC closes at noon
25 Christmas – ILRC closed
26 Kwanzaa Begins
31 New Year’s Eve
2003
On Tuesday, November 12, 2002, the Santa Maria ILRC staff and Advisory Committee to the Board of Directors will be hosting a “Barrier Awareness Day”. This past year our Advisory Board has brought many barriers in the community to the attention of the ILRC staff. We have planned an afternoon of showing people what it is like to try and get around in the community when there are so many barriers. We have invited anyone and everyone, from city council members to the state senator, with hopes of opening up the public’s eyes as to what our consumers have to go through every day of their lives. We will put some in wheel- chairs, others with walk- ers and follow planned routes to businesses in the community where they may find inacces- sibility. The only difference is they will be able to get out of the wheel- chairs and go home after we are through, unlike our consumers. We hope that it will be an educational event and we encourage changes to be made. The event will start at the local ILRC office at 1:00 and last until 3:00. All are welcome to attend.
BARRIER AWARENESS DAY
From Tina Horr
Page 4 October - December, 2002
A Call For Volunteers
from Nora Winger
ILRC is looking for volunteers to help us in the Santa Barbara office with routine office work.
We need the following types of assistance:
. Looking for volunteers to assist with copying of regularly used forms and manuals, as well as processing of bulk mailings.
. Need someone to organize and file Assistive Technology Specialist’s catalogues by the type of devices they contain.
. A volunteer is needed to assist with mail distribution, filing, bulk mailings on a quarterly schedule, duplicating bro- chures, directing visitors, and learning the etiquette of work- ing with people who have a disability.
Come try the challenge, stay for the personal reward. If you’re interested, contact Nora Winger at (805) 963-0595 V/TTY.
°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;°&Mac179;PRESCRIPTIONS - from A. Jenkins, an ILRC consumer We found a fantastic way of saving on prescriptions! For those of us with dis- abilities, a fixed income is the most limiting thing of all. That means we have to save wherever possible. By ordering our pre- scriptions on the Internet, we’re getting top quality generics de- livered right to our door. This little process saves about 60% off the pharmacies’ price. (I know this sounds hard to believe.) These are sample I’m saving $175.00 per The site is www.Habitat Readies For First Habitat for Humanity will In lieu of a down
prices for a 30-day supply: Norvasc 10mg, $18.60, Prilosec 20mg, $10.50, Lipitor 20mg, $48.90, Prozac 20mg, $6.90; Celebrex 100mg, $10.50; Nexium 20mg, $9.90; Zoloft 50mg, $7.20; Prevacid 30mg, $11.70, Zocor 10mg, $14.40 or Viagra 50mg, $46.80 (this is for 30 pills). And the savings go on and on.
month by ordering online and getting a 3 month supply at a time. That’s for just 3 prescriptions!
selfservice pharmacy.com, and comparing prices is easy. If you have a question, help is available by calling the help desk at (727) 468-3535.
Big Project In Santa Barbara
soon be breaking ground on its first three houses in Santa Barbara! Through cooperation with the City of Santa Barbara, Habitat for Humanity is in the process of acquiring an excess piece of land from a highway construction project that took place in the 1960s.
payment, partner families will perform 500 hours of “sweat equity” to help build their homes. Habitat sells the houses with a zero-interest loan, charging homeowners only the cost of materials and over- head. In this way, the homes will go to families earning one-third to one-half the median income in Santa Barbara, families who would otherwise have no chance of qualifying for a loan with which to buy a home at the current market rate. Ground-breaking will occur by the end of the year, and Habitat expects to complete the homes in 12 to 18 months. The project will require both skilled and unskilled volunteers and many charitable financial gifts to turn this dream into reality. Habitat needs and welcomes your support to help build houses, family, community and hope! Please call us at 692- 2226 to find out how you can help. Habitat For Humanity’s Re- Store is a building materials thrift store in Oxnard, selling new and used items. It provides an oppor- tunity for the public to buy these items at a low cost, as well as reducing the amount of recyclable building materials going in to local landfills. Proceeds from the ReStore are used to further Habitat’s mission. In 2001, Habitat for Humanity of Ventura County was able to build its first home with funds generated from the Re- Store. All donations are tax deductible. Businesses can rotate inventory by donating overstock and discontinued merchandise. The ReStore accepts the following types of materials, provided that they are in good, usable condition: . Appliances - stoves, ovens and cooktops . Sinks, bathtubs, and plumbing fixtures . New carpeting . Doors
October - December, 2002 Page 5
Schedule for ILRC Newsletter Submissions
Issue Deadline
January - March, 2003 December 1, 2002
April - June, 2003 March 1, 2003
July - September, 2003 June 1, 2003
October - December, 2003 September 1, 2003
Please send submissions (as MS Word attachments) to Jennifer Willer at jwiller@ilrc-trico.org, or mail to:
ILRC Newsletter Submissions
423 W. Victoria Street
Santa Barbara, CA 93101
. Windows
. Electrical items
. Hand tools
. Insulation
. And much more!
The Ventura area ReStore is located at 167 Lambert, on the corner of Vineyard Ave. and Lambert, in Oxnard. Hours are Monday through Saturday, 9:00 am to 5:00 pm. They can be reached at 805-485-6065.
Inspired by Successes
from BJ Legan-Adams
We so enjoyed reading the success stories of our sister offices that we at Ventura ILRC wanted to share some empow- erment and success stories that our office has supported in our community.
. Home Modifications: Instal- lation of shower bars, grab bars, accessible toilet, strobe light smoke alarm for an individual with a hearing loss, and lowered the front door peephole for wheelchair user. Built ramps, enlarged doorway, plaster repair, and kitchen cabinet repairs.
. Currently facilitating instal- lation of computer voice recognition system, facil- itated purchase and instal- lation of batteries for an electric scooter.
. Advocated for office ramp instead of curb approach, continued education of land- lord with CALDAG (California Disability Accessibility Guide- lines). Ramp built to access Victoria Plaza shopping cen- ter while remodeling, opening the previously locked door accessible to wheelchair users at a fast food restaurant. . Advocacy in criminal justice system and District Attorney’s office, advocacy with Better Business Bureau over Super- Cab “Accessible Service” false advertising. Continued advo- cacy for consumer accessible parking slot during con- struction on office complex. . Consumer utilized PASS for a new ‘used’ car purchase, another utilized PASS for a lap top computer for pursuing college education and is sav- ing for an automobile. Another began a new job and says it would not have happened without support from ILRC. . VTA ILRC staff members serve on community boards, inclu- ding: Ed Hunt Rehab Point Project, SCAT (South Coast Area Transit), IHHS (In Home Support Services Advisory Committee, Area Agency on Aging Home Modification Board, Caring Neighbors of Oxnard and the Oxnard Board
of Commissioners. . The staff participates With definite, but Check with your Our December
in ASL (American Sign Language) Class, once a week, taught by Christy Rahn and facilitated by Christine Miko. We are learning basic sign language to enable us to more fully serve the large Deaf & Hard of Hearing consumer base of Ventura County.
flexible, goals set by and with the con- sumer, we as an office work as a team to bring about positive results.
local ILRC office for Holiday Open House dates and times.
holiday open houses are traditionally lots of fun, as well as a great time to mix, mingle, and network with others of like-minded interests. You also get the opportunity to see a bit of the “behind the scenes” story of your local Independent Living Re- source Center. Not to mention the great snacks!
Page 6 October - December, 2002
(continued from page 1)
ILRC’s Successes
James Greer: Community Living Specialist – Ventura
At least 6 people I helped get P.A.’s, at least 2 couples find housing. 1 person went to work. Helped several people with transportation problems. I don’t know how many people called and were overwhelmed by their situation. I helped them to know that they could go on and event- ually they were solving their own problems. Some went on to help others solve their problems. I have helped at least one person get funding help to modify her home. Worked with the advisory board on In-Home-Supportive Services, a commissioner on the Commission of Community Relations, a board member of The Ed Hunt annual picnic for people with disabilities.
Suzi Stagg: Community Living Specialist – San Luis Obispo
I have spoken to housing about more concrete numbers which tell people more about who and what is served here in SLO. I can tell you housing “complains” that we send 40% of the TBRA’s for housing. Of those at least 75% will succeed in getting housing. We are the only agency that will refer to housing for married or single adults (other than mental health) without a qualifying child. Every agency within the consortium refers to us for help. In the month of May, sixteen consumers recieved TBRA’s to bridge the gap and get into Section 8 housing assistance. 5 have recieved housing already, 5 have appointments for interviews with housing and are actively seeking housing. EOC will tell you that the most important factor in preventing the consumer from being permanently homeless is getting them into housing as quickly as possible. Prior to ILRC doing the referrals for the non- mental health consumers, ALL single individuals or childless couples were not referred for assistance. They had to wait on the Section 8 waiting list. After mental health consumers, the largest group of permanently homeless is those who are disabled and on fixed incomes. My dad’s job at Social Ser- vices had a large impact on my view of homelessness and pov- erty. On our Thanksgiving table we set an extra place for one of my dad’s cases who had no place to go. Heck, I participated in a 24-hour fast in high school to raise funds, contributed to canned food drives, worked with students to gather up toiletries and deliver them to our local shelter. NONE of these activities will ever have the impact that getting just one person off - or preventing them from being on - the street will have. It’s not just the currently homeless that we are helping that makes a difference, we are preventing it! The lack of COLA increases of SSI, the high rental rates make it hard even for those who have housing to stay. What a great way to feel at the end of the day. Empowering for me and our consumers. Leeman Burke: Peer Support/I&R Specialist – Santa Maria 1. I have completed 25 intakes for Assistive Technology. 2. I have attended an outreach at AEGIS (Methadone Clinic).
3. I attended a Human Service Fair with Tina.
4. I am an active member of the SMAT committee.
5. I attended a meeting to discuss accessibility when the city builds a new library.
6. Every day I assist consumers with I&R issues.
7. When the phone is not ringing, I am on the internet looking for new resources.
Petra Lowen: Personal Assistance Specialist – Santa Barbara
Over the past 6 months I had a total of 74 placements, or, on average, more than 12 per month. Over the same 6 month period I had a total of 31 placements for consumers on In-Home Supportive Services, or, on average, more than 5 per month. It is more difficult to find personal assistants for consumers on In- Home Supportive Services because the rate of pay is only slightly higher than minimum wage. Despite this difficulty I usually fill a higher percentage of requests from consumers on In- Home Supportive Services than from consumers who pay for the services themselves (the reason is most likely that the latter consumers have more options outside the ILRC and often contact other agencies as well).
Since I started working at the ILRC in November 2000 the number of requests for personal assistants has overall increased steadily, even though I do not necessarily receive more requests each month compared to the previous month. I am sure this trend has several reasons but I believe that one of them is that I do a good job of making referrals
October - December, 2002
Page 7
and finding matches that work and the word has spread.
Let me now briefly explain what the personal assistance placements can mean for the consumers:
One of the consumers is depressed most of the time. Because of this she finds it very difficult, if not impossible, to pick up after herself and do basic cleaning functions. Because her personal assistant comes in 2 or 3 times a week, her apartment can be kept in a decent condition, without that help she would sink deeper and deeper into depression.
Two or three months ago I placed a personal assistant with a woman who, according to the son, who provided the intake, can be difficult to deal with. He more or less told me that she is 97 years old and will not likely change her ways. I have talked to the personal assistant several times since then and she told me that the consumer at times yells at her, is extremely impatient, a couple times even slapped the personal assistant. I explained to the personal assistant that first of all the consumer is never justified in slapping her and that she does not need to put up with that. Furthermore, even a 97 year old woman can change her ways a little bit. I suggested to the personal assistant to let the consumer know every time she does not treat her nicely how it makes the personal assistant feel and to ask her to be more considerate. I finally told the personal assistant that I would be happy to mediate between the two women if needed. According to the personal assistant this has made a little bit of a difference, even though the situation is still not ideal. Another time I was contacted by a live-in personal assistant who wanted to take a 6-week class about caring for an individual with Alzheimer’s disease. I was able to find a personal assistant for those dates and hopefully this will enable the live-in personal assistant to give the consumer better care. One time I was contacted by a woman who is a heavy smoker. After several placements that did not last (because the personal assistants had a difficult time cleaning a smoke-filled home) I found her a personal assistant who smokes herself and does not mind this kind of environment. Earlier this year I was contacted by Adult Protective Services about a woman who can be difficult and demanding and additionally does not get along with her husband. I found out that the consumer basically is not able to get out of bed at all and only gets up to use a commode chair next to her bed. She expressed that she does not trust her husband at all and he said that he does the best he can but is at his wit’s end since he is a senior as well. I was able to place a personal assistant who has worked there at least 8 hours a day since February. This gives husband a chance to be out of the house most of the day and seems to have improved the situation greatly. Finally I received a phone-call from a woman last month who was scheduled for cataract surgery but needed a personal (continued from page 6) ILRC’s Successes
General Information Circulation Base: 2,600 Published four times yearly; mail submissions to ILRC NEWS- LETTER at Santa Barbara office or e-mail to jwiller@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 jwiller @ilrc.tri-co.org. assistant to give her eye drops four times the day before surgery and the first few days after surgery. She was very nervous about the surgery. Within one day I placed a personal assistant who conveniently lived only about two blocks away. The surgery was very successful and greatly improved the consumer’s independence. These are only a few examples of the difference that personal assistants can make in the lives of our consumers. Carol Baizer “Accomplishments, 2001-2002” ‘To know in my work here that gains made are a collaborative effort between our consumers and this agency: I facilitate, we accomplish. I have built good working relationships with a number of individuals and agencies. Among the most noteworthy: Having the ILRC /BPAO recognized as part of “The Cooperative” between Alcohol, Drug and Mental Health and Department of Rehabilitation.
October - December, 2002
Page 8
Expanding ongoing contacts with members of the Recovery Community through relationship building with Cottage Health Systems, the Council on Alcohol and Drug Abuse, the Community Recovery Network, Full Spectrum Recovery, and Domestic Violence Solutions.
In recognizing the difference between unjust systems and the professionalism of the people employed by those systems, I have initiated the following advocacy actions:
1. Challenged the Pet Policy for People with Disabilities issued by the Housing Authority of the County of Santa Barbara
2. Filed ADA Title II and Title III complaints over Para transit services and inaccessibility of Health Care Services for wheelchair users who receive Medi-Cal. (ongoing)
Finally, I believe that the South African Disability Community’s slogan “ Nothing About us Without Us” begins at home. I attempt to keep clear boundaries with consumers and co-workers and am responsible for both my successes and my failures.
(continued from page 7)
ILRC’s Successes
VOTE VOTE VOTE VOTE VOTE VOTE VOTE VOTE VOTE VOTE VOTE VOTE
Computers, timers, wheel- chairs and text telephones (“ttys”) are common types of “Assistive Technology.” Assistive tech- nology is anything that helps you in your daily life, work or edu- cation. It can make doing things easier, faster, or just possible!
The ILRC and the California Foundation for Independent Living Centers are interested in your experiences using assistive technology. You may have a story about getting a new device, looking for a special wheelchair or finding a new way to read. You might also have had trouble getting equipment to help you. Because people with disabilities know their own experiences best, we are trying to talk to as many people as we can.
This research is done in small groups called “focus groups.” We bring 8-10 people together for 2 hours and ask you questions, like an interview. You will be able to share your stories and meet other people with stories. We espe- cially want to hear from people who have not yet gotten what they need. We want to include people with a range of disabilities, including people who do not think of themselves as disabled, such as some people who are deaf, older persons and those who are from some cultural minorities. We will be doing these focus groups at an accessible com- munity location and will give you a small gift for participating. We hope to finish the focus groups between September and January 2003, so the sooner you can call us back to indicate your interest, the better. The Federal Department of Education funds the project. Your name will not be used and all the information about your invol- vement is completely confi- dential. Are you interested in being involved? If so, there are four steps in participating. 1. CONTACT US! 2. Find out which focus group is right for you, what date, where, etc. 3. Read over the informed con- sent form and mail it back if you agree to participate. 4. Come to the focus group! We also are planning a big survey for 2003. Even if you do not want to come to the focus group, you can still answer
questions on the survey.
Hablamos Español y enseñamos para los sordos. (We speak Spanish and we are accessible for people who are deaf. Contact: Patty Neumeyer, Assistive Technology Program Co-ordinator, (805) 963-0595 (V/tty).
Your Participation Requested For Assistive Technology Community Research Project
from Patty Neumeyer
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