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AHEAD OF THE TIMES
Volume 22, Number 12
September, 2002

HEALTH CARE FOR ALL!
As an advocacy organization, Independence, Inc. recently endorsed the Health Care Access Resolution (House Concurrent Resolution 99), which was introduced in 2001 by the Congressional Universal Health Care Task Force to promote discussion and strategic planning in Congress and the nation on how to achieve affordable, high quality health care for all. The resolution directs Congress to enact legislation by October 2004 that provides access to comprehensive health care for all Americans. Rather than supporting a specific model of health care reform, the Resolution promotes 14 attributes of a just and efficient health care system. 

The first of these attributes is affordability for individuals and families, businesses and taxpayers and the removal of financial barriers to needed care. This principal needs little explanation-who hasn't be affected by increasing premium costs, co-pays, deductibles, etc.? People with disabilities have been and still are affected disproportionately by this factor, since we are often priced out of the market due to lack of resources as a group and the high health care needs of some of our members. 

Additional attributes of the Resolution will be highlighted in future articles in this newsletter. In the meantime, if you would like more information, log on to www.uhcan.org. Stay tuned to learn what you can do to convince Kansas legislators to support this important effort. And, if you belong to a group that might want a speaker on this subject, please contact the local organizing group, Kansas Health Care for All, by calling Norm White at 841-8890.

Independence, Inc. will be closed Monday, September 2 for Labor Day. 
No transportation will be available.

CLC POLICY CHANGES
Sadly, as too often happens, a few people spoil things for everyone. A few people think it's appropriate to view pornography on public computers. Others think it's appropriate to download and install any piece of software they want on agency computers without permission. And a few others think it's appropriate to make personal long distance calls without permission. Next thing you know, the privileges of everyone need to be restricted because of the actions of a few. This is what has happened with the public computers and the Computer Learning Center phone at Independence, Inc. 

As a result, we are implementing Internet blocking software. No, we are not big fans of this, but the alternative was less acceptable. (Please note: should anyone attempt to access a legitimate site on one of our public computers and be blocked, please let us know and we will promptly correct that.)

And, as a result, we have had to implement a "no downloading and installing software" policy as well. Without permission, people have been downloading all sorts of software to any machine they happen to be on, often installing it improperly. Some software causes conflicts with assistive technology software while other software causes computers to crash. Staff are having to spend significant amounts of time having to deal with these problems, so it has to stop.

And, finally, we are no longer allowing people to make outgoing phone calls from the CLC. If someone in the lab needs to make a phone call, they should ask at the front desk for assistance. So.out goes the baby with the bathwater. Bummer, huh?

COOKING CLUB
Shrimp and mixed vegetables stir-fry is on the menu for Monday, September 16, 4:30-6:30 p.m. at Independence, Inc. Our own Tim Cross will show you how to chop those vegetables and make those shrimp sizzle. Don't miss out on this mouth-watering event. To reserve your spot at the dinner table, call Ranita at 841-0333.

QUILTING/ARTS AND CRAFTS GROUP
On Monday, September 16 the Quilting/Arts and Crafts Group will meet in the large conference room 1-3 p.m. Instructor, Ms. Wanda, will demonstrate how to make fun and creative crafts. If you have any questions call Ranita at 841-0333.

FIRST TIME HOMEBUYERS WORKSHOP
The next First Time Homebuyer's Workshop will be Saturday, September 14, 9:45 a.m. - 1 p.m. at the United Way Center, 2518 Ridge Court. For more information call 842-5494.

MUSIC SUPPORT GROUP

• MAGNET would like to thank Susan and Bob Mikesic for the donation of a Yamaha PSR-6 electronic keyboard.
• MUSIC SUPPORT GROUP EVENT AT THE LIED CENTER
  The Lied Center has donated 40 free tickets for Robert Mirabal with Rare TriabalMob "Music from a Painted Cave".  The Music Support Group will be attending this event on Saturday, September 14, at 7:30 p.m. If you would like to attend, please contact Ranita at 841-0333 for free tickets and accessibility information. Thank you Lied Center for your continuing support of Independence, Inc.

BORED AND BROKE
Here are some of the free events around Lawrence this month. This information comes courtesy of www.visitlawrence.com 

• LAWRENCE FARMERS' MARKET
  One of the oldest Farmers Market in Kansas, offering fresh fruits and vegetables, baked goods, flowers, herbs, and crafts. 1000 Block of Vermont, Tuesday and Thursday 4 - 6:30 p.m.; Saturday 6:30-10:30 a.m. 785/331-4445
• WAKANYEJA: BABY STAR QUILTS
  Made by Native American Mothers through the Healing the Sacred Hoop program, these small quilts, whose Indian name means "sacred gift" illustrate a traditional Indian design September 3 - 30 at Lawrence Public Library during regular hours of service. 843-3833
• FALL ARTS AND CRAFTS FESTIVAL
  The 23rd annual Fall Arts and Crafts Festival will be held September 8, 10 a.m. - 5 p.m. in South Park, 11th and Massachusetts. This long-running tradition in the Lawrence community features handmade crafts and original artwork by more than 150 artists and craftsmen. 832-7940
• HASKELL INDIAN ART MARKET
  Two day outdoor market featuring Native American artist from around the country; also artist demonstrations, entertainment and food booths. September 14 - 15 at Haskell Indian Nations University, 23rd & Barker. Saturday 10 a.m. - 6 p.m.; Sunday, 10 a.m. - 5 p.m. 864-4245
• SPENCER CONSORT IN PERFORMANCE
  Enjoy an afternoon of art and music! September 15, 2:30 p.m. at Spencer Museum of Art, 1301 Mississippi, KU. 864-4710
• 11th ANNUAL HARVEST OF ARTS
  Nine days of local art of ALL kinds. Downtown storefronts become an art gallery. There's music in the streets, a film festival, dance, poetry, children's activities. September 28 - October 8, admission to some events. 785/393-1019

ON THE WEB
If you are a person with a disability considering a career as a medical professional, The Center for Disability Issues and the Health Professions (CDIHP) at the Western University of Health Science in Pomona, CA features a web page titled, "Profiles of people with disabilities in the health professions." The website address is http://www.westernu.edu/cdihp/relatedlinks.htm#19 .

Here you can read about a doctor with post polio who is the model for the character of Dr. Weaver on "ER"; a visually impaired physician who specializes in physical medicine and rehabilitation; an orthopedic surgeon who is short-statured; and a doctor with cerebral palsy who is a rehab specialist; and more! 
There are other interesting pages on the CDIHP website ( http://www.westernu.edu/cdihp.html ), with titles such as "Educating Health Professionals on Disability Issues" and a "History of Disability and the Health Professions." The director of the CDIHP is Brenda Premo, former director of a CIL in California, and also former director of the Department of Vocational Rehabilitation for the state of California, who is working to inject the philosophy of independent living into the health professions. Check it out! 

INDEPENDENCE, INC. BOARD MEETINGS
As directors of a non-profit community agency that uses public funds, the Independence, Inc. Board of Directors welcomes interested persons, including agency staff and consumers, to attend monthly board meetings. These meetings are scheduled for the third Thursday of each month, with the possible exceptions of August and December, at 5:30 p.m. in the large conference room at Independence, Inc. 
Each meeting begins with a public comment period to provide those in attendance an opportunity to share feedback and/or comments on agency issues. After this comment period, the board conducts its business according to a prepared meeting agenda. Attendance at board meetings can provide an opportunity to learn more about the agency and the board, as well as an opportunity to learn about how to contribute to a community agency by serving on a board, whether at Independence, Inc. or elsewhere. 

If you would like to attend an Independence, Inc. board meeting and need a reasonable accommodation, please contact Tammie Torneden at 841-0333 one week in advance of the meeting.

LABOR DAY PICNIC
The Second Annual Living Wage Picnic will be held Monday, September 2, 2 - 5 p.m. at South Park. Homemade ice cream, games, and entertainment. Free and open to the public.

KANSANS SIGN UP FOR NO-CALL LIST
Kansans can register to be on the no-call list by calling toll-free 1-866-362-4160, or by going online at www.ink.org/public/ksag.  Enforcement of the law begins November 1. Any telephone solicitor who calls a telephone number on the list is subject to civil penalties of as much as $10,000.

WANTED: Small window unit air conditioner. Donation or low cost. Call 749-3472

WANTED: Electric box or oscillating fans that are broken or that you no longer want. Any brand and size accepted. If necessary, unwanted fans can be picked up. Contact Michael at 785/840-9861 or 965-3906, 9 a.m. - 5 p.m., Monday - Saturday.

FREQUENTLY ASKED QUESTIONS
Here are some frequently asked questions about the Home and Community Based Services Physical Disabilities (HCBS-PD) Waiver Program! 

• Q. Do you have someone who can come over and clean my house?
  A. The Physical Disabilities Waiver program provides services that may include, but is not limited to, housecleaning. Medicaid funds this program, so only people eligible for Medicaid who have been determined disabled by social security standards may use the Waiver services. The Waiver provides services to help people ages 16-65 whose primary disability is physical, live independently in their own homes. People must also meet the long-term care threshold requirements through an assessment process. 
• Q. Can I get services on the HCBS PD Waiver program set up now so that someone can clean my house next week?
  A. No. There is approximately a six-month waiting list. This is a statewide waiting list controlled by the PD Waiver Manager at SRS Central office in Topeka. We have no control over it, and cannot make things go faster. In extremely rare circumstances, the Waiver administrator will make exceptions to the waiting list. 
• Q. What are the waiting list crisis exceptions? 
  A. "Eligibility for waiting list crisis exceptions includes: 
  • Persons who are at imminent risk of serious harm because their primary caregiver is not able to provide the level of support necessary to meet the person's basic needs;
  • Persons who require protection from confirmed (by SRS) abuse, neglect, or exploitation.
  • Persons who are at risk of family break-up, involving a minor dependent child or dependent spouse.
  • People who are in the end stages of a terminal illness and life expectancy is documented by a physician to be less than six months. SRS policy now states that people must choose between HCBS-PD services and the Medicaid Hospice Benefit."
• Q. I might have to go into a nursing home if I don't get services now. Isn't that an exception to the waiting list?
  A. Unfortunately, no. Everyone on the waiting list is in danger of going into a nursing home. Meeting Waiver eligibility requirements means that people also meet nursing home eligibility requirements. Believe it or not, using "Waiver" services technically means a person has "waived" their right to be institutionalized. (Hmmmm.does someone in the federal government have something backwards here.) 
• Q. I have already found someone who I want to work for me; do I still have to be on the waiting list? 
  A. Yes. The waiting list exists because the state only has enough money to fund services for people currently on the Waiver. When someone goes off, someone else goes on. The Waiting list is not related to the availability of attendant care.
• Q. I have Medicare; someone told me I am eligible for this program. True?
  A. No, you must have Medicaid to obtain services through the HCBS PD Waiver. You may be put on the waiting list if Medicaid approval is pending, but to obtain services you must have an open Medicaid case. People often confuse Medicaid and Medicare, especially when facing a new illness or injury and are new to the "system." Medicare is the red/white/blue card with the identification number the same as the social security number. Medicaid is through SRS, and usually involves a blue or green id card with a number beginning 001. Occasionally someone has a pink card because of other insurance, etc. 
• Q. Are there other HCBS programs?
  A. Yes. There is the HCBS Head Injury Waiver for people with Brain Injuries. There is also the HCBS MR/DD Waiver for people with developmental disabilities. There is a Technical Assistance Waiver for children with life threatening illness dependent on some form of technology for life support. The Frail Elderly (FE) Waiver is for people over the age of 65. A new rule allows people on the PD Waiver who turn 65 on the program to choose between staying on the PD Waiver or moving to the FE Waiver. Medicaid funds all HCBS Waiver Programs.
• Q. Who do I ask if I have other questions about the HCBS PD Waiver program?
  A. Please call Beth Chao at 841-0333 or toll-free at 1-888-824-7277. 

NATIONAL DISABILITY MENTORING DAY
National Disability Mentoring Day: Career Development for the 21st Century, is designed to bring students and job seekers into the workplace where they can learn firsthand about career opportunities -- not just entry-level and dead-end jobs, but careers. Mentoring takes more than one day and NDMD can get the process started and draw national attention to the importance of encouraging young people with disabilities to develop the skills and obtain the experiences necessary to compete in today's economy. Ideally, participation in NDMD can translate into ongoing relationships, internships and even jobs.

"Economic empowerment is at the heart of disability rights," says Andrew J. Imparato, President and CEO of the American Association of People with Disabilities. "Millions of talented and qualified people with disabilities face unemployment. Until they gain access to meaningful career opportunities they cannot truly become full participating members of our society. Nor can they live the American dream. Disability Mentoring Day provides an excellent opportunity for students with disabilities to make connections that can provide a competitive edge about how to successfully join the workforce and contribute to our nation's economic growth."

Last year, Independence, Inc. and the Lawrence Public Schools partnered to organize a National Disability Mentoring Day event for a small group of students. This year, we would like to identify mentors for at least 30 students from a wide variety of career fields. This experience opens the door for many students to explore career interests and to network with professionals in their career field of choice.

If you or anyone you know is interested in participating in NDMD either as a mentor or student participant, or for additional information, contact Jennifer Schwartz or Ranita Wilks at Independence, Inc. 841-0333, 888-824-7277, jennifer@independenceinc.org or ranitaw@independenceinc.org. 

PROTECTING YOUR EYES IN THE SUMMER SUN: 
CHOOSING SUNGLASSES
Summer may be almost over, but it's not too late to choose the right sunglasses for you. Below is a list of the seven colors of sunglasses and their particular attributes.

• Gray - Cuts glare, sharpens focus and is soothing.
• Green - Good glare reduction and soothing. Mutes brightness and color.
• Amber - Heightens contrast, cuts glare, sharpens focus and is soothing.
• Yellow - Heightens contrast, color and detail. Maximizes brightness and sharpens focus.
• Orange - Sharpens focus and detail. Good glare reduction.
• Blue - Takes red color and brightness away.

Proper filtering eye wear should cut glare but not visual functioning. Additionally, remember that sunglasses are only part of the remedy for glare. It is equally important to wear a hat with a three inch brim to prevent direct sunlight from entering your eyes.

Newsletter Survey
We are conducting a survey to determine what type information readers of our newsletter, Ahead of the Times enjoy and find most valuable. We also would like to know if there is something that you particularly don't like. Your feedback will help us ensure that each month you receive the information that you want and can use. You can also complete this survey on line at http://www.independenceinc.org/nlsurvey.htm Thank you for taking a few moments to let us know how you feel.

What type of articles do you read:	Always	Sometimes	Never
National disability policy and legislation	_____	_____	_____
State disability policy and legislation	_____	_____	_____
Lawrence area programs and events	_____	_____	_____
Independence, Inc. programs	_____	_____	_____
Independence, Inc. events	_____	_____	_____
Support group announcements	_____	_____	_____
Recreational activities/opportunities	_____	_____	_____
Housing issues	_____	_____	_____
Calendar	_____	_____	_____

Other: _______________________________________________________________________________

Comments: _______________________________________________________________________________

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What type of articles, information, or changes would you like to see in the future: __________________

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Do you feel that Ahead of the Times presents to the community a positive image of 
Independence, Inc. and the independent living movement?   ______ yes     ______ no

If "no" please explain: ______________________________________________________________

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Who are you? (check all that apply) 

_____ Consumer of Independence, Inc.
_____ Community Member
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Ahead of the Times is available in regular, large-print, braille, audio cassette, by e-mail, or online at http://www.independenceinc.org/news/newslet.htm.  If you would like to change the format in which you receive your newsletter, or if you need assistance with completing this survey, please contact us at 785/841-0333, 1-888-824-7277 (toll-free) or e-mail tammiet@independenceinc.org.