November 2005 Edition - Access Press

November 10, 2005

Inside

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"Without vision, the people will perish, and without courage and inspiration, dreams will die."

■ Medicare Part-D— p. 3 ■ The Spoon Theory— p. 5 ■ Mentoring Day— p. 6

— Rosa Parks

Nonprofit Org. U.S. Postage PAID Mpls. MN Permit No. 4766

Volume 17, Number 11

Minnesota’s Disability

Community Newspaper

November 10, 2005

CHARLIE SMITH AWARD GIVEN TO MN-CCD

by Terri Ricci

T

he Minnesota Consortium for Citizens with Disabilities (MNCCD) is earning their just rewards this year. They have won numerous awards over the past year.

John Tschida, Tim Benjamine and Joel Ulland.

Co-Chairs Joel Ulland of the National Multiple Sclerosis Society-MN Chapter and John Tschida of the Courage Center have certainly established

A Resounding Thank You To Family Caregivers

by Lance H. Hegland

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ccording to National Family Caregivers Association, during 2003 Minnesota ranked as the 21st most prevalent family care giving state with approximately a half million family caregivers providing a half billion hours of unpaid care per year, which would normally cost $4.5 billion per year.

Nationally, there are approximately 27 million family caregivers providing 29 billion hours of unpaid care annually at an estimated value of $257 billion. Those numbers are almost impossible to imagine! In other words, nearly one out of 11 Minnesotans provided 21 hours, or approximately $200 worth, of unpaid care per week for a family member.

Each year, the month of November has been set aside nationally to recognize the hard work, dedication, intense compassion, and tremendous security family caregivers provide. It is a time to think about

the various challenges family caregivers face: often a lack of understanding by employers, lack of instruction by healthcare professionals, and lack of community support. In response, numerous organizations are working to raise awareness about community programs that offer support, guidance, and advocacy for family caregivers.

What is a family caregiver?

Carol Levine, a family caregiver and the Director of the Families and Health Care Project at the United Hospital Fund of New York, says, “The two parts of the term are equally important. ‘Family’ denotes a special personal relationship with the care recipient; one based on birth, adoption, marriage, or declared commitment. ‘Caregiver’ is the job description, which may include providing personal care, carrying out medical procedures, managing a household, and interacting with the formal healthcare

and social service systems on another’s behalf. Caregivers are more than the sum of their responsibilities; they are real people with complex and often conflicted responses to the situations they face.”

This November, the National Family Caregivers Association will introduce a new theme for National Family Caregivers Month: Caring Every Day, which corresponds with their Caring Every Day Campaign.

The Caring Every Day Campaign encourages family caregivers to take three steps every day (Believe in Yourself, Protect Your Health, and Reach Out for Help) to make their lives easier, improve care, and raise awareness about their continued love and commitment.

Everyone can participate—it is very simple! Care recipients and family members can create Certificates of Appreciation for family caregivers.

Friends, neighbors, and other

community members can offer support by providing respite time; bringing over dinner; offering dinner out; or performing handyman, housekeeping, or transportation activities. Churches can acknowledge and honor the activities of family caregivers with a special worship service. Local businesses can offer discount cards or gift certificates, especially for products and services that “pamper” caregivers. Community groups can help decorate for the holidays or address holiday cards. The opportunities are endless!

For more information about potential activities, local organizations, the Caring Every Day Campaign, or National Family Caregivers’ Month, please contact the National Family Caregivers Association by calling 800-896-3650, e-mailing info@thefamily caregiver.org, or visiting their Web site at www.thefamily caregiver.org. ■

the makings of a great pair.

They joined forces and brought together the disability community into one great force to be reckoned with.

The Charlie Smith Community Award, given by the Access Press Board of Directors, recognizes MN-CCD’s leadership in the following four areas: 1) Legislative Change: educating elected and appointed officials in advocating for changes in public policy at the national, state and local level to remove barriers that prevent or delay successful community integration for individuals with disabilities; 2) Administrative or Systems Change: Advocating and educating for change within government agencies at all levels to ensure laws, ordinances, and policies are implemented and administered in a way that is consistent; 3) Community Education: Informing organizations and individuals within and outside the disability community on the need for policy change and advance the needs and goals of Minnesotans with disabilities; 4) Consumer Education: Informing consumers of their rights and opportunities to influence the policymaking process and providing them with information regarding changes to programs and services that affect their daily lives, with the goal of developing strong self-advocacy skills.

As John Tschida stated in his August Access Press article Victories and Concerns As Legislature (Finally) Adjourns, “Several core components of the Minnesotans with Disabilities Act of 2005, the comprehensive proposal championed by the Minnesota Consortium for Citizens with Disabilities, were enacted into law, including lower parental fees for parents of kids with disabilities, choice of community provider for those leaving nursing homes, lower prescription drug copayments and an increase in the personal needs allowance.” For more information on the laws that were enacted, go to the Access Press Web site at www.accesspress.org/ archive/2005/08/story_ victories_and_concerns.htm.

The MN-CCD has won other awards in 2005 including: The Policy Award . . . from the Department of Human Services for their demonstrated public policy leadership, advocacy and education, all dedicated to improving the lives of persons with disabilities. This Award was given at the Age and Disability Odyssey Conference in Duluth; A Special Award For Outstanding Achievement . . . from the Minnesota State Council on Disability for successfully enacting important provisions of the Minnesotans with Disability Act during the 2005 legislative session; The First Annual Luther Granquist Systems Change Award . . . sponsored by Arc Minnesota recognizes their advocacy efforts on behalf of people with Award - cont. on p. 11

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November 10, 2005

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Tim Benjamin, Editor

very one of the 150 or more people who came to the Third Annual Charlie Smith Award Banquet on November 4, 2005 helped to make the evening a success. I had a great time and I’m pretty sure most everyone else did too. The night took off with the help of Emcee and Chairwoman of the Banquet, JoAnn Cardenas Enos, and Chairman of the Board of Directors, Mike Chevrette, who acted as CoEmcee. They carried the whole evening without a flaw! Thank you both for your efforts, and a round of personal applause to the entire board, Terri Ricci and all the Access Press staff and volunteers. Their planning for the banquet, like all their work, demonstrates their commitment to the paper and their dedication to the advancement of the disability movement.

The Access Press board expresses through the Charlie Smith Award the gratitude of the entire community to Minnesota Consortium for Citizens with Disabilities (MN-CCD).

The 2005 award was accepted

by John Tschida and Joel Ulland, co-chairs of the MNCCD, on behalf all the members of MN-CCD. We are very proud and appreciative of the accomplishments of MN-CCD in last year’s legislative session. John and Joel gave very gracious and informative speeches that were the highlight of the night.

It was also great to welcome and thank the past award winners, Margot Imdieke Cross and Rick Cardenas. Their efforts continue to serve our entire community.

thrilled to write that Access Press’s website has recently passed the 10,000-visit mark for the year 2005. What really pleases all of us is that the average number of visits per day is growing—from an average of 25 per day during the mid-summer to 96 per day now.

And over 30,000 pages have been viewed since January 1, 2005. The website seems to be gaining momentum.

Lupus is the disease we are highlighting this month. It’s a difficult disease to understand and diagnose. It’s one of the autoimmune diseases that attacks a person’s organs. We have a couple of good articles about what lupus is, and a personal story about its effects.

We have some good news to Christine Miserandino expass on to our readers. I’m plains her “spoon theory,” a

radar. NAMI-MN is doing their best to keep it on the front burner at the capitol.

They’re conducting surveys and collecting solid evidence of what works and where we need to focus our energy and money to minimize this problem. Thanks, Sarah. You and the Building Bridges Project The National Alliance on Men- at NAMI-MN are doing great tal Illness of Minnesota work!

(NAMI-MN) has added a local perspective to Chuck Camp- We are very proud and flatbell’s article, Prisons: Are They tered that the Minnesota State the New State Hospitals? from Council on Disabilities prelast month. The article by Sa- sented Access Press with the rah J. Krueger of NAMI-MN Media Award on October 27, shows that Minnesota is do- 2005. Cliff Poetz is the first ing better than the national winner of the Council’s new averages, but we are still fail- Governor’s Award for outing far too many people in jail standing service to the disand prison who have mental ability movement. Congratuhealth issues. The best news lations to all State Council’s is that the Minnesota Legisla- award winners. See more deture has the issues on their tail on page 12. ■ way to describe her life with her disability. She uses spoons as a metaphor for personal life energy. It’s a very cool way to explain life with a disability. Next time someone asks me about my disability I’ll be using the spoon theory to explain it.

Editorial

Letter U.S. Department of Transportation To The Editor ... Makes 3-part Recommendation

by Clarence Schadegg Letter to the Editor Thank you for your article about hurricanes Katrina and Rita. I was more than disappointed to see how unorganized and unprepared we were to handle these disasters. In a disaster like that, everyone in the affected area is a victim, disabled or not.

Minnesota has victims of its own who are disabled, disadvantaged, and victims of unwanted pregnancies. In downtown Minneapolis, the Red Cross was accepting donations in the IDS Building. They had tables set up for food donations. Not more that 50 feet away I saw a woman looking through a trash can. She might have been looking for food or aluminum cans to exchange for cash. If Minnesota can organize so quickly to help 5,000 victims from another state, why can’t Minnesota organize that quickly for the disabled, disadvantaged, and troubled citizens of our own state?

I am in favor of sending aid to those areas to help the victims of Katrina and Rita, however, I had mixed emotions when I saw how quickly and efficiently Minnesota organized to help 5,000 victims. Minnesota was willing to provide food, water, clothing, shelter, education, jobs, and spiritual needs to Sincerely, 5,000 victims.

Mark Olson

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s a blind person who uses a service animal in my day-to-day activities, I am deeply concerned with the U. S. Department of Transportation (DOT) threepart proposal which will, if approved, violate my rights to fair and equal travel on airlines.

The U.S. Department of Transportation three-part recommendation will have grave consequences for users of service animals. The DOT has recommended that “If the service animal does not fit, it should be re-located to another space in the cabin if possible in the same service class. If no single seat will accommodate you, you may be offered the option of purchasing a second seat, traveling on a later flight, or having the service animal travel in the cargo hold.” This is the Notice

Access Press Co-Founder/Publisher (1990-1996) ................................................................. Wm. A. Smith, Jr. Co-Founder/Publisher/Editor-in-Chief (1990-2001) ..................................... Charles F. Smith Board of Directors .......................................... JoAnn Cardenas Enos, Mike Chevrette, Mary Kay Kennedy, Kelly Matter, Tom Squire, & Kay Willshire Editor ......................................................................................................................... Tim Benjamin Financial Manager/Editorial Assistant ........................................................................ Terri Ricci Cartoonist ..................................................................................................................... Scott Adams Production ...................................................................... Ellen Houghton at Presentation Images Office Assistant .......................................................................................................... Ekta Prakash Sales/Marketing ...................................................................................................... David Hadlich Distribution ....................................................................................................... S. C. Distribution Access Press is a monthly tabloid newspaper published for persons with disabilities by Access Press, Ltd. Circulation is 11,000, distributed the 10th of each month through more than 200 locations statewide. Approximately 650 copies are mailed directly to political, business, institutional and civic leaders. Subscriptions are available for $25/yr.

Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed.

Paid advertising is available at rates ranging from $16 to $20.70/column inch, depending on size and frequency of run. Classified ads are $10, plus 45¢ per word over 12 words.

Advertising and editorial deadlines are the last day of the month preceding publication, except for employment ads which are due by the 25th.

Access Press is available on disk. Call MN State Services for the Blind, 651-642-0500 or 800-652-9000.

Inquiries should be directed to: Access Press • 1821 University Ave. W. • Suite 104S • St. Paul, Minnesota 55104 • (651) 644-2133 Fax (651) 644-2136 • E-mail: access@accesspress.org • Website: www.accesspress.org

Editorial material does not necessarily reflect the view of the editor/publisher of Access Press.

of Proposed Rule Making pub- 3. It is unrealistic to assume I will have the luxury to relished by the Department of schedule my flight at a later Transportation in the Federal time. I do have a life and I do Register on November 4, 2004. have places I need to get to on time. It is non-sensical for I have some suggested the DOT to expect me to take changes to the DOT proposal, a later flight because my dog and they are: is considered to be too big for an assigned seat. This 1. Keep the service animal user, recommendation will make it along with their working dog, harder for me to make my together in the same asconnections to catch other signed seat. If the person flights when I have to travel and their service animal have across the country. It will to move, put us together in also make it impossible for an alternative seat, either first me to keep my job as my or second class. The travel employer will not understand agents who have booked my why I chose to schedule a flights had me assigned in later flight when I was exthe Bulk-head seat so my pected to be at work in andog would have more space other city at a specific time. to stretch out and relax. The dog and the service animal user are a team, and some of 4. Lastly, it is equally unrealistic to recommend that I put us have many years of a my service animal in cargo. working relationship with My dog guide is not a pet. our service animal. SeparaThe conditions in cargo are tion from our service animal not safe for animals and I is not an option. would not put my dog in such a dangerous situation.

2. Do not charge the service animal user for the seat next to him or her because our “On February 1, 2001, Presidog might be considered too dent George W. Bush anbig for the assigned space. It nounced a $1 billion plan to is ridiculous to charge me for help Americans with disabilianother seat because some- ties. The purpose of this proone perceives my dog as too gram is to provide access to big for the space at my feet. jobs, education and assistive I’ve flown many times and technologies by: Funding 10 my large dog guide has never pilot programs for the improvebeen an issue with the people ment of transportation for who were seated next to us. people with disabilities.” (AcThe airlines and the flight cording to the National Busiattendants have been ex- ness and Diversity Council.) ceedingly supportive and helpful to me on my flights The DOT proposal will not help across the U.S. It is uncon- the disabled and the proposal scionable that if the DOT will also limit our use of transproposal becomes a rule it portation. How are those of us will negatively affect my seat- who use dog guides supposed ing rights in future flights. to meet our employment and/ or education responsibilities if the DOT proposal requests us

to postpone our flight at a later time? The DOT proposal puts us and our service animal at risk of injury if our animal is put in cargo. I do not understand why the DOT will take us backwards when so much money has been appropriated to provide those of us with a disability better access to jobs and transportation across the United States. The DOT plan contradicts President Bush’s plan for disabled people to have access to jobs, transportation and education. The DOT recommendations cited above are unacceptable because such a change could negatively affect the way I’m treated on future flights.

“The Air Carrier Access Act (ACAA) and the U.S. Department of Transportation’s implementing rules prohibit discriminatory treatment of persons with disabilities in air transportation.” (National Business and Disability Council). However, the proposal by the DOT is nothing less then discriminatory to those of us who are disabled and users of service animals. Many of us who are disabled are already marginalized because of our disability, and the DOT proposal will make it harder for us to bridge the employment gap.

The DOT proposal is a form of discrimination because this plan will result in a difference between how disabled people are treated to that of non-disabled people. These recommendations present a danger to service animals and to the safety and mobility of service animal users. The DOT proposal is also unrealistic since many disabled people are alEditorial - cont. on p. 6

November 10, 2005

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Living From The Bedside Medicare Prescription Drug Program (Part D) Impacts

by Jennifer Mundl, MS

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ressure sores are noth- The software is found at many company specializing in these ing to fool around with local computer stores such as beds is www.WoundCare for individuals with CompUSA and Best Buy. Beds.com on the Internet. disabilities. They account for •Monitor stands are position- Circulation is improved by $1 billion in medical costs each ing units for the monitor when continually alternating the air year according to Emedicine in a laptop computer is not avail- pressure of the mattress. The 2003. Additionally, it is esti- able. A monitor stand, avail- Alternating Pressure System mated that between 5% and able at many local computer with Pump from Medical Har8% of all paraplegics and quad- stores, is an adjustable stand mony is one option. riplegics will die from a pres- capable of being pulled up •Several mattress options are sure sore (decubitus ulcer). and down or right and left. A available. Memory foam adBed rest is a common regimen desktop computer should be justs to the form of your body once the pressure sore has de- placed near the bed along with each time you lay on the bed. veloped. It may last a couple the monitor, keyboard, and A bubble mattress has small days or many months. The re- mouse. A hospital stand, air filled pockets to provide occurrence rate is 90% once available at most medical sup- less pressure over the entire the pressure sore has healed. ply stores, will allow the user body.

Careful management of skin to have the computer directly •Moisture is detrimental to skin integrity is crucial in the pre- over the bed. Make sure the breakdown. Several compavention of pressure sores or stand supports the weight of nies sell a device that alarms re-occurrence. your unit. when wetness is detected.

So, what can you do to make Reading your bed rest tolerable?

•Page Turner devices are electrical units in which a book is Environmental Control placed. A page is turned when Controlling household appli- the user presses a switch or ances such as the television operates a joystick. GEWA and lights give the user in- Page Turner features the abilcreased independence along ity to turn forward and backwith the capability to control a ward, read multiple thickness wide variety of electrical de- of books or magazines, opervices. There are many ways of ate through a variety of acoperating them ranging from cess methods, and turn more voice recognition to switch than one page at a time. It is scanning. Some options are: pricey, but the cheaper ver•Relax III is a switch operated sions do not work as well. electronic aid of daily living Zygo sells the unit.

(EADL) which is capable of •Adjustable copy holders or operating the television, tele- book stands are a simple sophone, X10 modules, and lution. They can be placed on VCR. TASH supplies this a hospital table mounted onto device. There are actually sev- a microphone stand. The eral models to choose from PerfectData spring-loaded dependent on price and fea- stand provides easy positiontures desired. ing since it can be placed to •Sicare is a voice activated the side of the bed and posiEADL providing command to tioned over the person. It common devices. It has pro- adjusts in many angles not grammable codes making it available in standard stands. easy to set up. It is also sold

by TASH. Playing Games •X10 Mini Control Unit is a •WebCam is a camera which less expensive option pro- attaches to your computer to vided the user is capable of give a live picture. The probpressing a half-inch square lem with playing games from flat button. It provides on bed is the inability to see the and off activation of appli- table where the game pieces ances plugged in to a module. are. A WebCam positioned RadioShack sells a starter unit. over the table allows the bedridden individual to easily parComputer Usage ticipate in games without •Laptop computers are easier straining the neck. to position. Most are able to •Cardholders are wooden open up flat then be placed on blocks of wood with a series a wooden stand at a high level of slots carved in. The cards for easy viewing. It becomes stand up without support possible to use the laptop when placed into the slots. either on one’s side or lying Courage Shop Services creflat on one’s back. The ac- ate specialized models. cess method may need to be •Shufflers will actually mix up accommodated as typing on your cards with a touch of a the keyboard is difficult. button. Place half of the deck •Voice recognition is one so- on one side and the other half lution. It allows the user to on the other side to have the completely operate a com- cards shuffled. puter hands-free. Dragon NaturallySpeaking Preferred The Bed has proven to be the most •Hospital beds provide flexaccurate to use. It is impor- ibility as the head and feet are tant to have enough RAM able to go up and down. Some and speed. 512 MB of RAM medical companies will rent a running over 2 GHz provides hospital bed when it is needed a conducive environment to for a short period of time. implement voice recognition. •Furthermore, there are specific beds for wound care. One

Technological Treatment •Varipulse provides a high powered wash of the wound.

The pulsating sodium chloride water stimulates circulation at the same time it cleans the wound of bacteria. Two places in the Twin Cities offering this wound care are the physical therapy departments at Unity and Mercy Hospital.

•The Versatile 1 Wound Vacuum System promotes wound healing by applying localized negative pressure on the wound bed. This occurs through a high quality piston operated suction unit that is assisted by a very innovative pressure regulator.

•As a solution to all types of chronic wounds, Regenesis® Biomedical has introduced the Provant Wound Closure System. Provant is based on Cell Proliferation® Technology (CPI®) which allows the body to naturally heal the wound by stimulating dormant cells, causing them to release natural growth factors, and divide rapidly, helping heal wounds in half the time and up to half the cost of traditional wound therapies. To learn more about Provant® and how it can help you or a friend, visit www. regenesisbiomedical.com or call Advanced Healing Systems at 612-435-2111.

•After medical professionals have indicated you can start getting up, it still will be a while before resuming all normal activities. It starts by being up in your wheelchair a couple minutes a day then slowly leading to more and more time. 70% of pressure sores occur on the buttocks or ischium. A seating evaluation should be considered to lessen the chance of reoccurrence. There are several organizations such as Courage, Gillette and Advanced Therapy Services which use a weight distributed technology to determine an exact pattern of your pressure areas.

•Beyond wound care technology, the Internet provides essential information regard-

by Lance H. Hegland MN-PDP ends 12/31 Medical Assistance Drops Most Drug Coverage for Dual Eligibles

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nrollment in the Medicare Part D program will begin November 15 and will become effective January 1. Part D is the new voluntary drug benefit implemented by the federal government in response to rising pharmaceutical costs, which had caused some medication to be unaffordable for some seniors and individuals with disabilities. This is the biggest Medicare program change in 40 years!

Although Part D will help make most medications more affordable, state and other insurance drug programs are changing to take advantage of these new benefits too. Therefore, consumers may experience confusion during the transition regarding which health insurance program is helping to cover their prescription costs.

If your drug coverage is changing, you should have received, and will likely continue to receive, a barrage of mail notifying you of the change and what you need to do. But sometimes, those notices may look like “junk mail” and get discarded.

Here are the most important changes everyone needs to know: ing treatment and prevention of pressure sores. Check out www.emedicine.com/MED/ topic2709.htm.

Even with activities and technology for wound care, the process may seem excruciatingly slow and you may become bored regardless of your best efforts. Keep a “cheery” face and remember it’s only temporary. ■

• The Minnesota Prescription Drug Program (MN-PDP) ends December 31.

• If you are eligible for both Medicare and Medical Assistance, Medical Assistance will not cover prescriptions after December 31 (with a few exceptions). Plus, the monthly co-payment charges and limit for Medicare could be much higher than your current Medical Assistance co-payment charges and limit depending on the number and actual cost of your medications. Medicare Part D copayments for people eligible for both Medicare and Medical Assistance will range from $1 to $5 per prescription filled.

When total prescription drug costs reach $5,100 in a year, the co-payments end for the year.

• Some people will qualify for additional assistance to help pay for Medicare Part D plan costs (e.g., premiums, deductibles, and co-payments).

For more information, please read Jim Czechowicz’s article, “Extra Help to Meet Prescription Costs,” also in this month’s edition.

• There are approximately 63 different Medicare prescription drug plans being offered by 24 different organizations.

Each drug plan may charge different costs by requiring different premiums, deductibles, and co-payments. Also, drug plans may cover different drugs; they may use different drug formularies.

• Most people must actually choose, and then notify Medicare of their choice, by enrolling in a Medicare Part D drug plan.

• If you are currently eligible for Medicare but choose not to enroll in a Medicare Part D plan, you may pay a “penalty” for the rest of your life through higher monthly premiums if you apply for drug benefits in the

future. For example, Bill is eligible, does not currently take any medication, does not want to pay the coverage premium (approximately $30/ month), and does not enroll.

Four years from now, Bill’s doctor prescribes several expensive medications. When Bill finally enrolls, he will be required to pay an additional 48% penalty in addition to his current monthly premium for the rest of his life (a 1% per month penalty for the 48 months he waited).

• Even if you are one of the few people automatically enrolled in a Medicare Part D plan, it may not be the best plan for you. It might not even cover the medications you take.

What you need to do: • If you live in a skilled nursing facility (SNF) or intermediate care facility (ICF/MR), you will automatically be enrolled in a plan and will not be charged any premiums, deductibles, or co-pays.

• If you receive coverage through AXIS Healthcare/ UCare Minnesota (the Minnesota Disability Health Option program —MnDHO), you don’t need to do anything.

You will be automatically enrolled in the most appropriate drug plan and receive the full amount of additional assistance to pay for any drug plan premiums and deductibles.

You will still need to pay copayments though.

• If you are eligible for Medicare AND use Medical Assistance, Medical Assistance for Employed Persons with Disabilities (MA-EPD), or a Disability Waiver program, you will automatically be enrolled in one of the drug plans.

BUT, that plan may not be the BEST plan for YOU. Make a list of the medications you are taking, then use the tools on the Medicare Web site Medicare - cont. on p. 8

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by Pulmonary Hypertension Association Pulmonary hypertension (PH) is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels and may become life threatening.

Symptoms of pulmonary hypertension include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. When pulmonary hypertension occurs in the absence of a known cause, it is referred to as primary pulmonary hypertension (PPH). This term should not be construed to mean that because it has a single name it is a single disease. There are likely many unknown causes of PPH. PPH is extremely rare, occurring in about two persons per million population per year.

Increasing Awareness About Pulmonary Hypertension

through the lungs like ventricular and atrial septal de- by Paula Swanson fects, chronic pulmonary thromboembolism (old blood was diagnosed with luclots in the pulmonary artery), pus in 1989, but looking HIV infection, liver disease and back, I am sure I had lupus diet drugs like fenfluramine and in high school. I became very dexfenfluramine are also causes ill at the end of my senior year of pulmonary hypertension. and had to miss my senior prom.

I was released from the hospiPulmonary hypertension is fre- tal just in time for graduation. quently misdiagnosed and has The physicians never could often progressed to late stage understand why I became ill. by the time it is accurately di- In the fall I started attending agnosed. Pulmonary hyperten- nursing school. Life seemed to sion has been historically be going well. However, I rechronic and incurable with a member being so exhausted all poor survival rate. However, the time. At the time I related new treatments are available my exhaustion to school and which have significantly im- work, but now I can see that it proved prognosis. really was the lupus.

Recent data indicate that the length of survival is continuing to improve, with some patients able to manage the disorder for 15 to 20 years or Secondary pulmonary hyper- longer. tension (SPH) means the cause is known. A common cause of The information provided on SPH are the breathing disor- the PHA Web site is provided ders emphysema and bronchi- for general information only. It tis. Other less frequent causes is not intended as legal, mediare the inflammatory or col- cal or other professional adlagen vascular diseases such vice, and should not be relied as: upon as a substitute for consultations with qualified pro•Scleroderma fessionals who are familiar with your individual needs. ■•CREST syndrome or, Pulmonary Hypertension As•systemic lupus erythemato- sociation, 850 Sligo Ave, Suite sus (SLE).

800, Silver Spring, MD 20910, please contact PHA’s offices Congenital heart diseases that at 301-565-3004. cause shunting of extra blood

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I married shortly after graduating from nursing school. The time while planning a wedding and waiting for my state board results to come in the mail was very stressful. I finally found out that I passed the exam just a week before the wedding.

That helped reduce some of the stress. I found a job and life went on, again.

During the first few years of the marriage, I had two children, Ben and Ashley. My health began to deteriorate even more when Ashley was two, I was exhausted constantly and had a hard time keeping up with work and being a mom. I started to lose weight and couldn’t understand why. I was worried about losing my job because I wasn’t working up to my ability.

My journey with lupus has been a long one. Having to be on prednisone daily was a real struggle. My dose kept getting higher and I hated the side effects. I gained a lot of weight and blew up like a balloon. For years I had noticed extreme fatigue and shortness of breath.

I just related it to my lupus and being out of shape. I was diagnosed with pneumonia several times at the Urgent Care after experiencing symptoms of shortness of breath and chest discomfort. I was becoming increasingly more short of breath and I had a hard time just walking up a flight of stairs.

Then one day I had a fever, I wasn’t too concerned because this happens when I have a flare-up with my lupus. Just to be sure, I decided to go into Urgent Care. As the physician listened to my heart and lungs, she looked a little concerned.

She called in another physician. They thought I was having a heart attack. I was admitted to the coronary intensive care unit. I remember being told something about my pulmonary pressures being high.

The next day the cardiologist came into my room and informed me that I had secondary Pulmonary Hypertension (PH). I was already living with lupus and wasn’t prepared to take on another chronic disease. I remember asking what it was. I learned it is high blood pressure in my lungs that causes the right side of my heart to enlarge. Is there a cure? I remember being told that there isn’t a cure but there is a treatment to help maintain the symptoms. I was told that I would not be able to work anymore and that I needed to file for disability. I remember saying to the staff I am not disabled and I still want to work and I am not going to give up.

After years of seeing gastroenterologists, dermatologists, neurologists, oncologists, psychiatrists, and hematologists for various symptoms which included rashes, intestinal problems, seizures, and low blood counts, I was finally diagnosed with lupus. I was actually relieved that something really was wrong with me. Now people could understand that I was not crazy and depressed.

I spent about a month in the

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tests were four-times the normal.

Then I was attached permanently to this pump and could never disconnect it except when I was changing cassettes of the medication. For me, it became a normal routine. I couldn’t leave the house without it.

Because I had to be monitored during this process, I went back to the coronary intensive care unit. I was in there for two days and believe it or not, my pulmonary pressures remained the same on the Viagra as they were on the Flolan. I was ecstatic—I couldn’t wait to have my central line removed forever, thinking that now I only would have to take pills— Viagra at that. It was like a dream come true. Viagra is also a vasodilator and it works in many ways. Can imagine the look on the pharmacist’s face when I dropped off my prescription for Viagra? I needed 250 pills for one month. I had to come back the next day because they didn’t have enough in stock.

I was devastated. He told me that I needed to start the Flolan again. Because I did not want to give up, I asked the cardiologist about Viagra. I had heard that it was being used in PH patients. The drug wasn’t approved so the cardiologist was very reluctant. I pleaded with him to just let me try it and if it didn’t work I would go back on the Flolan.

The central lines were supposed to be pretty permanent; however, I had the unfortunate experience of my lines falling out four different times.

This was a big deal because you could only be off of the Flolan for 3-6 minutes or I could go into rebound and possibly die. My lines fell out when I least expected it. When I got out of the shower, I noticed my line had fallen out. I called 911 so they could restart the I.V. in my arm. Then I went by ambulance to have It has been almost four years another central line put in. now that I have been taking the Viagra. It was a process of I was on the Flolan for about getting insurance to cover it three years when I found out since it wasn’t approved to there was a new drug being treat PH. It certainly was a lot approved for PH called cheaper than the Flolan which Tracleer. I was so excited to try cost about $4,000 a month. A this new drug even though year ago Viagra was approved one of the major side effects is for the Treatment of PH. I feel liver toxicity. I was told that I very fortunate that I was able needed my liver function tested to be on it before it was aponce a month. I had my blood proved. checked after being on the drug for one month. Two days later I have come a long way from I received a phone call from my the grim prognosis of possibly cardiologist informing me that dying to having to quit work I needed to stop the medica- and be on disability insurance. tion because my liver function Now I work part-time and I am able to walk three miles a day 3((5 0(1725,1* without becoming short of breath.

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intensive care unit. It was a long struggle. The drug Flolan was in the process of being approved for secondary PH at about the time I was diagnosed.

Flolan works like a vasodilator.

Unfortunately the method of delivery was a continuous flow through an I.V. A catheter is inserted surgically through the subclavian vein and threaded into the right atrium of the heart.

I was scared. I went through the procedure to have the catheter placed.

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It is exciting to know that there is on-going research regarding Pulmonary Hypertension.

More new treatments are becoming available for this rare disease.

The 7th International Pulmonary Hypertension Conference PHAâ&#x20AC;&#x2122;s 7th International PH Conference and Scientific Sessions: Roadmap to a Cure will be held June 23 - 25, 2006 in Minneapolis, Minnesota. It is a wonderful opportunity to bring together patients, caregivers and medical professionals. Please contact PHAâ&#x20AC;&#x2122;s offices at 301-565-3004 or con ference@phassociation.org.

November 10, 2005

What Is Lupus?

The Spoon Theory

Excerpt from Lupus the Disease, by Arthur M. Krieg, M.D.

by Christine Miserandino

“I’m not sure, but I think you may have lupus.” These are the uncertain words lupus patients often first hear of their disease. Systemic lupus erythematosus is an “autoimmune disease”—a disease in which the immune system attacks one or more of the body’s own tissues instead of defending itself from invading bacteria and viruses as it is supposed to do.

tients with subacute cutaneous lupus erythematosus do not have systemic lupus erythematosus; their autoimmune disease generally remains restricted to the skin.

These closely related conditions are forms of lupus and share some common features.

However, in general in this overview, we will use the term “lupus” to refer to SLE, the systemic form of the disease.

The immune system has two principal types of cells, B cells and T cells, to protect us against invading germs. B cells make proteins called “antibodies,” which are the bullets that kill these germs. T cells control the B cells and also kill virusinfected cells themselves. In lupus, for some unknown reason, the B cells and T cells become confused. The T cells direct the B cells to make “autoantibodies,” which are antibodies directed at one’s own cells. In addition, the T cells become “autoimmune,” and kill healthy cells.

Because of the highly variable and often confusing symptoms, it is unusual for patients with symptoms of lupus to be correctly diagnosed by the first physician they see. Although it is more common than multiple sclerosis, lupus often is not considered initially by the physician evaluating a patient.

In some lupus patients, the diagnosis is obvious, and the treatment prompt and effective. Potentially life-threatening manifestations of lupus (such as kidney disease) are generally very clear, even though it may not be apparent that the lupus is the cause. In other lupus patients, nonspecific symptoms such as fatigue and achiness may predominate, making the diagnosis more difficult.

y best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy.

Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

The resulting autoimmune attack can cause a remarkable variety of symptoms, depending on which tissues are involved. For example, lupus frequently attacks the skin, producing rash; the joints, causing arthritis; the blood, leading to anemia (low red blood cell count) or decreased numbers of platelets (particles in blood which help blood to clot); or the lining of the lung, resulting in pleurisy.

This overview discusses mainly the systemic form of lupus. Another form of lupus is discoid lupus, which is also an autoimmune disease. However, 95% of the time, discoid lupus remains restricted to the skin and does not involve internal organs. A third form of lupus is called subacute cutaneous lupus erythematosus.

Like discoid lupus, most pa-

In most lupus patients, the diagnosis is not at first obvious but gradually becomes apparent. The average lupus patient waits for about two years from the time symptoms appear until they are finally told with confidence that they have lupus. Besides feeling extremely frustrated and wondering if they are really imagining some of their symptoms, such patients may go from one doctor to another with the hope of finding someone who knows what they have and how to treat it. Physicians who do not recognize lupus sometimes think that patients have a psychosomatic disorder and refer them for psychiatric therapy.

Patients may have such unhappy encounters with physicians that they lose faith in the medical profession. We hope that as lupus becomes better known by doctors and lay people, such experiences will become less common.

History of Lupus Research Several centuries BC, Hippocrates described a skin rash that may have been a form of lupus.

In centuries since, the term “lupus” (from the Latin for “wolf”) was initially used to describe a disease marked by ulcerating skin lesions (which looked like wolf bites), typically on the face. Today, such patients are diagnosed with discoid lupus.

The association of lupus with the now well-known “butterfly” facial rash was described in the mid-1800’s. By the late 1800’s, several European physicians had realized that lupus could affect the internal organs as well as the skin. A Viennese physician, Moritz Kaposi, went so far as to suggest that there were two types of lupus: one that primarily affected the skin and another that could cause a fatal systemic illness. In the United States, it was Sir William Osler at the Johns Hopkins Hospital who first reported the systemic form of lupus.

Over the following decades, physicians around the world carefully documented the pathologic (involving or resulting from disease) changes of lupus but had no accepted treatments to offer nor any clear idea of what caused lupus. The first useful test for diagnosing lupus was reported in 1948 by Drs. Hargraves, Richmond and Morton at the Mayo Clinic.

They observed a peculiar type of cell they termed the “L.E.” cell (for lupus erythematosus) which was frequently present in the blood of lupus patients.

Lupus - cont. on p. 6

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As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me

out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised because I thought being my roommate in college and friend for years that she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words.

How do I answer a question I never was able to answer for myself? How do I explain every

detail of every day being affected, and describe the emotions a sick person goes through with clarity? I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand? If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell, I grabbed spoons off of the other tables. I looked at her in the eyes and said, “Here you go, you have Lu-

pus.” She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

5

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics.

Little did she know how serious I would become?

I asked her to count her spoons.

She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons.” But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at

least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

I asked her to list off the tasks of her day, including the most Most people start the day with simple. As she rattled off daily unlimited amount of possibili- chores, or just fun things to do, ties, and energy to do what- I explained how each one would ever they desire, especially cost her a spoon. When she young people. For the most jumped right into getting ready part, they do not need to worry for work as her first task of the about the effects of their ac- morning, I cut her off and took tions. So for my explanation, I away a spoon. I practically used spoons to convey this jumped down her throat. I said point. I wanted something for “ No! You don’t just get up. her to actually hold, for me to You have to crack open your then take away, since most eyes, and then realize you are people who get sick feel a “loss” late. You didn’t sleep well the of a life they once knew. If I was night before. You have to crawl in control of taking away the out of bed, and then you have spoons, then she would know to make yourself something to what it feels like to have some- eat before you can do anyone or something else, in this thing else, because if you don’t, case Lupus, being in control. you can’t take your medicine, Spoon Theory - cont. on p. 15

6

November 10, 2005

All People Want Real Work For Real Pay

Disability Mentoring Day Program

by Don Lavin

by The American Association of People With Disabilities (AAPD)

T

here is a lot of talk today about demandside employment strategies in our nation’s workforce development circles. America is working hard to prepare and connect job seekers with its emerging workforce needs as defined by our business leadership community. This makes a great deal of sense. Who can argue with ideas to supply a prepared and talented labor pool and insure a strong economy and world-class workforce?

The problem with a one-dimensional view of workforce development is that many people with something to contribute are often left behind. This is true for America’s largest minority population—people with disabilities. Few realize that only three in ten citizens with significant disabilities actually hold competitive jobs in the workforce. This constitutes a 70% unemployment rate in an economy that features a five percent rate for everyone else.

fund the broad range of Social Security disability, welfare, and community rehabilitation needed by unemployed people with disabilities. The annualized costs to operate these programs are growing out of control and are now a fixed portion of our national, state, and local human service budgets.

So who owns this problem?

Unemployment is everybody’s problem! We can choose to ignore it. However, institutionalized, persistent unemployment is not going to go away by looking the other way. As responsible citizens, we all have an important role in addressing it. I don’t know of anyone who has all of the answers.

Fortunately, there is a national movement afoot to try to correct the present problem.

National research demonstrations now tell us that many people with disabilities can succeed when customized employment approaches are used. This means they are served best when we see them as individuals and look careIs this merely a social problem fully at the unique talents they of little concern to private in- have to offer. dustry? Well, think about it.

America not only loses the Let’s be clear here. We are not productivity of some citizens, talking about corporate charbut our economy is dragged ity or volunteer work. We are further by higher taxes. It takes talking about real work for real literally billions of dollars to pay inside the workforce. And

we are talking about how customization of job duties, training, work conditions, use of technologies, and other supports can lead to success.

Customization means planning and delivering support one employee at a time.

Of course, a disability condition should never be a deciding factor in hiring somebody for a competitive job. Conversely, it shouldn’t be an exclusionary factor either (unless it’s a bona fide hiring issue). Hiring decisions should always be about one’s ability to contribute and be productive.

With that said, wouldn’t it be wonderful if more employers took an active interest to assess how customized employment can add value to their business objectives? The late Francis Fogerty, a founder of Rise, Incorporated, once said: “If every employer took an interest and hired just one individual with a disability, we wouldn’t need Rise.” Fogerty’s vision was accurate 34 years ago and is right on target today.

Don Lavin is Vice President of Rise, Inc., Spring Lake Park.

For more information visit: www.rise.org. ■

LUPUS - Cont. from p. 5 The realization that these cells resulted from cellular destruction led to the suspicion that lupus was an autoimmune disease. This suspicion was confirmed by a report in 1957 that anti-DNA antibodies were present in the blood of lupus patients. Since then, our understanding of lupus and our ability to treat this disease have advanced considerably.

Dr. Arthur M. Krieg is recognized for his research which established that the immune system recognized bacteria and viruses not only by telltale features of their protein clots, as scientists have long known, but by simple yet distinct patterns in the microbe’s DNA. Now his further research has shown that bacterial DNA can activate the immune system, suggesting a possible expla-

nation for the fact that infections often seem to trigger lupus flares. The immune activation by germ DNA is blocked by anti-malarials which may provide a clue to the beneficial side effect of anti-malarials in treating lupus.

Reprinted with permission from Lupus Awareness, the newsletter of the Iowa Chapter, LFA. ■

M

ore than 10,000 students and job seekers with disabilities had the opportunity to be mentored by people who are in positions of interest to them, thanks to a program called Disability Mentoring Day (DMD).

As a result of participation, many of these students and job seekers offered educational guidance, longer-term mentoring opportunities, internships, or full-time employment.

AAPD is able to implement DMD in regions in every state, plus the U.S. Virgin Islands and 17 countries, including Argentina, China, Kosovo and Israel. DMD is effective because it implements a grassroots structure that fosters creativity and empowers locally based, on-the-ground businesses, non-profit organizations, schools, government agencies and consortiums to use a nationally recognized and trusted model to adapt and As stated by a mentor partici- make work for their own dipant in last year’s DMD pro- verse communities. gram, “I didn’t see someone in a wheelchair—I saw someone DMD is designed to provide who likes to do what I do. I now students and job seekers with recognize that, in a workplace, disabilities a firsthand experiit’s all about compatibility that ence in learning about career makes a team.” opportunities in a variety of their chosen fields. It helps to DMD is a core program of the promote the importance of enAmerican Association of couraging these students and People with Disabilities job seekers to develop the nec(AAPD), the largest cross-dis- essary skills and experiences ability membership organiza- to compete in today’s comtion in the country. Thanks to petitive workforce. A 2004 a strong organization of vol- participant from West Virginia unteer local coordinators, said, “DMD was a good way to

learn about a particular job and the skills that are needed to be successful on the job. I was especially pleased to be mentored at a bank, since I plan to work in the banking business when I complete my training.”

The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership organization, promotes the economic and political empowerment of the more than 56 million children and adults with disabilities in the U.S. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA).

For additional information and to learn about AAPD member benefits, advocacy efforts and programs, visit the AAPD Web site: www.aapd.com. ■

EDITORIAL - Cont. from p. 2 ready burdened with limited income and extreme costs in expenses in travel and other basic life activities which some non-disabled people take for granted. “Earned income represents only 71% of the total income of people with disabilities, compared with 92% for those with no disabilities. (U.S. Department of Labor). The 2004 Harris Survey of Americans with Disabilities, National Organization on Disability cites, “Of all working ages of people with disabilities, ages 18 to 64, only 35% are employed full or part-time compared to 78% of working age people without disabilities.

my wife and I boarded our return Northwest Airlines Flight from the Biloxi Gulf Port Airport for Memphis and Minneapolis. Imagine what would have happened to us if we were asked to book another flight. I believe that if we delayed our flight two or three days, neither of us would have gotten out alive because of hurricane Katrina. If my dog guide was put in cargo, he would probably have died as the heat index in the Gulf Port region of Mississippi was in excess of one hundred and seven degrees. The heat and humidity were also unbearable around the Memphis Airport. To expect such a well trained animal On Thursday, August 25, 2005, like my dog guide to travel in

Accessible Space, Inc. ASI

such heated conditions without water, protection from the heat and unnecessary exposure to the elements is cruel at best. A dog guide is an extension of the service animal user, and separation from our service animal will put us at risk of injury.

Please support us in our effort to stop the DOT from either implementing or enforcing this incredibly discriminatory proposal. For further information, please contact President Rebecca Kragnes of the Minnesota Guide Dog Users at rebeccak@tcq.net.

Editorial written by Clarence Schadegg, M.Ed. ■

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November 10, 2005

7

Career And Mentoring Day Valuable Work Support For People With Disabilities Programs For Americans With Disabilities

by Divya Ghia

C

areer and mentoring opportunities for the minority job seeking market are generally harder to come by, but on Wednesday October 26, 2005 the situation proved to be quite optimistic for those individuals. This day served as a symbol of great potential for the job seekers who struggle with a disability, because that day, they had the chance to connect and network with a host of different employers and business leaders from all over Minnesota.

by Jim Czechowicz

O Participants speaking to the representative from the City of St. Paul during the career fair.

appointed Special Assistant for Employment to the Assistant Secretary of the Office of Special Education and Rehabilitation and the Acting Deputy Commissioner of the Rehabilitation Services Administration in the US Department of Education (OSERS), gave an inspiring discourse about her personal struggles with a disability and how she was able to overcome the obstacles in her life to achieve her success. Sheehy Keller encouraged the audience to shoot The morning session kicked for the stars and go for their off with representatives from dreams. the participating companies The Minnesota Business Leadership Network presented the 2nd annual Minnesota Career Development Day which was held at Medtronic Corporate World Headquarters. The event was a wonderful marketplace for college students and graduates to put their best foot forward and focus on their abilities and strengths to gain a job or internship opportunities with major corporations such as Medtronic, 3M, Microsoft, and Deloitte.

ctober was National Disability Employment Awareness Month. And it is not just an observance for Americans with disabilities. As the name implies, we all should be “aware” of the possibility that we or a family member could become disabled, and what valuable support is available to help us return to full participation in the workplace and community life.

Unfortunately, statistics show that a young person today has almost a three-in-ten chance of becoming disabled before reaching retirement age. While almost 70% of workers today have no private, long-term disability insurance, almost all do have Social Security disability The last event of the day was insurance coverage. a career fair which offered students and job seekers a chance This coverage means that workto market their skills and tal- ers who are no longer able to ents to the employers at their work because of a disability given booths and also to par- may qualify for monthly benefit ticipate in a resume review ses- payments. And this program can also pay monthly benefits sion. cause of their experience in having gained success in school and in their jobs, regardless of their disabilities. The wise-ranging panelists consisted of a Medtronic employee, college students, disability activists, and many others.

The key message conveyed by the presenters throughout the day was, that no matter what your disability, focus on your abilities. Dismiss the “dis” in disability, and just see how success will follow you everywhere you go. Presenter and State Representative, Torrey Westrom reminds us, “If you

to spouses and children under age 18 (or age 19 if they are fulltime students in elementary or high school). In addition, once a worker has been receiving disability payments for two years, he or she will qualify for Medicare coverage.

Just as importantly, if a person with a disability would like to go to work, Social Security can offer vocational rehabilitation through the “Ticket to Work” program. Nearly all individuals receiving Social Security and Supplemental Security Income (SSI) disability benefits receive a “ticket” that they can use to get free vocational rehabilitation, employment or other valuable support services from an approved provider of their choice. Social Security pays these providers for successfully helping a beneficiary go to work.

longer have to choose between keeping their health care coverage and trying to go to work.

Medicare hospital insurance coverage now continues for eight years and six months after most Social Security disability beneficiaries go to work.

Medicare coverage continues even if an individual no longer receives a monthly disability benefit from Social Security.

Medicare coverage for SSI disability beneficiaries may also be extended. And each state has the option to extend Medicaid coverage to SSI beneficiaries who work.

If you or someone you know is a person with disabilities who would like more information, visit our Web site at www. socialsecurity.gov/work or call Social Security at 1-800772-1213 TTY 1-800-325-0778 to learn more. ■

The Ticket to Work program is voluntary and also has impor- Jim Czechowicz is in the Oftant provisions to ensure that fice of Public Affairs, Social people with disabilities no Security, Minneapolis MN

don’t control your attitude, it The MNBLN will host another Career Development Day in will control you.”

2006, as well as hosting the US For more information about the Business Leadership Network Minnesota Business Leader- Annual meeting in Minnesota. ship Network or about the If you are interested in being above event, log onto: www. involved in the planning of either of these events, please mnbln.org. contact Terri Ricci at 651-6442133 or Karen Quammen at 763505-2663. ■

Representative Torrey Westrom, speaking at the Employer Breakfast.

Next, a Q and A session with a panel of speakers who have disabilities addressed various topics through a great selection of questions from audience participants. The panel’s The keynote speaker, Jennifer speakers gave invaluable inSheehy-Keller, the President’s formation to the audience beaddressing their corporate values to the attendees. Fairview Health Services, Federal Agencies, and Ameriprise Financial were among the presenters.

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Michael Valencia, Workforce Inclusion Manager of Medtronic, speaking at the conference.

Representatives from Ameriprise spoke with participants during the career fair.

November 10, 2005

8

Incarceration Of Individuals With Mental Illness: A National Dilemma With Local Solutions

by Sara J. Kreiger

I

n the last edition of Access Press, the article Prisons: Are They the New State Hospitals, highlighted the national dilemma of increased rates of incarceration for individuals with mental illness. This article will focus on the situation in Minnesota and the creative ways Minnesota is addressing this dilemma.

In Minnesota, approximately 25% of the prison population is known to have a serious mental illness, according to the Bureau of Criminal Justice statistics. However, Minnesotaâ&#x20AC;&#x2122;s overall rate of incarceration is much lower than the national average because many individuals are diverted from the prisons to treatment and community supervision. Minnesotaâ&#x20AC;&#x2122;s focus on restorative justice, adoption of drug courts and, as exemplified by Hennepin county, creation of mental health courts are a few of the

ways that Minnesota is creatively addressing the needs of offenders and keeping people out of prison. Is this effective? Well, the crime rate for Minnesota is 21% lower than the national average, and the rate of re-offense is 23% lower than the national average.

Minnesota has made significant advances in responding to individuals with mental illness. In the past, police officers were de facto first responders in mental health crisis situations. Creation of Crisis Intervention Teams in many counties has ensured that individuals receive appropriate intervention from mental health professionals instead of solely law enforcement officers. Another key response is Minnesotaâ&#x20AC;&#x2122;s provision of increased access to health insurance. With only 8.3% Minnesotans uninsured, Minnesota has the lowest rate

of uninsured individuals in the nation. With more people insured, more people can access needed mental health treatment.

In addition to diversion programs and improved responses to individuals with mental illness, in 2001 the Minnesota legislature approved measures to require the Department of Corrections (DOC) to offer discharge planning to individuals with serious mental illness who are in prison. In 2005 the legislature passed a mandate requiring the DOC share a model discharge plan with county jails for optional implementation. When people are incarcerated their federal benefits (social security income or medical assistance) are terminated. Upon release, they do not have access to financial support or healthcare.

They must re-apply for benefits in order to receive treat-

ment, a time consuming and daunting process. Delays in treatment can be detrimental to an individualâ&#x20AC;&#x2122;s health and smooth transition into the community.

In the prisons, discharge planning begins 90 days before release. It includes connection to county case management, initiation of application for federal benefits, setting a post-release appointment with a psychiatrist, providing an offender a 30-day supply of medication, a prescription for another 30-day supply, as well as assisting in locating employment and housing.

Minnesota mental health advocates are also addressing the broader issues. For example, the Minnesota Mental Health Action Group is seeking ways to build a more comprehensive mental health system which includes stable

Extra Help To Meet Prescription Costs

by Jim Czechowicz

T

here is still time to apply for extra financial help through the new Medicare prescription drug program that goes into effect on January 1, 2006.

These days, many Medicare beneficiaries may be trying to decide which of the Medicare plans to sign up for, since enrollment begins on November 15. But if you have limited income and resources, donâ&#x20AC;&#x2122;t forget to see if you can qualify for extra help to pay for part of the monthly premiums, annual deductibles and prescription co-payments under the new prescription drug program.

That extra help could be worth an average of $2,100 per year for those who qualify. ³+RZ FDQ , JR WR ZRUN DQG NHHS P\ KHDOWK LQVXUDQFH"´ ´+RZ GR , UHDOO\ NQRZ ZKLFK EHQHILW ,¡P RQ"¾

Social Security is taking applications now from Medicare beneficiaries who may be eligible for the extra help. To qualify, an individual must have total annual income below $14,355 and resources limited to $10,000. The limits for a married couple living together are higher: $19,245 in combined annual income and $20,000 in resources. These resources can be slightly higherâ&#x20AC;&#x201D;an additional $1,500 per personâ&#x20AC;&#x201D;if some of the money will be used for burial expenses. Even if your annual income is higher, you still may be able to get some help if you support other family members who live with you; have earnings from work; or live in Alaska or Hawaii.

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Some beneficiaries will qualify for the extra financial help automatically. Anyone who has both Medicare and Medicaid, or Medicare and Supplemental Security Income, or anyone whose state pays his or her Medicare premiums, will not have to complete an eligibility application.

million people have already applied. But if you are not one of them and you think that you might qualify for the extra help, you can complete an online application at www.social security.gov. Or you can contact Social Security at 1-800772-1213 TTY 1-800-325-0778 and ask for an application in the mail, or request more information. But the clock is ticking, so do it today, and then enroll in the new Medicare prescription drug program between November 15, 2005 and May 15, 2006. â&#x2013;

housing and employment opportunities. This may help prevent even more people from having contact with the criminal justice system.

it is likely that there are many individuals with mental illness in county jails. Services may vary from county jail to county jail in Minnesotaâ&#x20AC;&#x2122;s 87 counties and discharge planning is not This fall, the National Alliance mandated. on Mental Illness of Minnesota (NAMI-MN) launched the NAMI-MN, through Building Building Bridges Project. The Bridges, is conducting a stategoal of this project is to speed wide survey of county jails. the restoration of federal This survey asks questions healthcare and financial ben- about the prevalence of mental efits to individuals with mental illness, how the jail recognizes illness who are being dis- and responds to mental illness charged from correctional fa- and current discharge praccilities. The Building Bridges tices. NAMI-MN hopes to Project convened a group of 25 gain a greater understanding stakeholders. Representatives of the current trends in jail treatfrom the state and county cor- ment of mental illness, help rections, the state and county support jails in providing sersocial services, the legislature vices to clients with mental and non-profit agencies met to illness and offer trainings on discuss solutions to this is- effective ways to work with sue. inmates that have mental illness.

The Building Bridges Project will give special consideration While the national level issues to the situation of individuals behind this dilemma are comwith mental illness in county plex, Minnesota is leading the jails. There are no statewide way in finding solutions on a statistics on the prevalence of state level. By simply ensuring mental illness in the county that individuals have access jails. County jails hold people to treatment, housing, employwho are awaiting trial or of- ment and county services upon fenders serving a short sen- release from prisons or jails, tence for low level offenses. Minnesota may decrease the As some studies have indi- number of individuals who find cated that the majority arrests themselves without treatment of individuals with mental ill- and end up continually in and ness are for non-violent crimes, out of jail. â&#x2013;

MEDICARE - Cont. from p. 3

Also, it is important that all www.medicare.gov or call the beneficiaries understand that Linkage Line 800-333-2433 to even if they qualify for the find out which plan is best for extra help, they still need to you. Also, you will automatienroll in a Medicare-approved cally receive the full amount prescription drug plan to obof additional assistance to pay tain both coverage and the extra for any drug plan premiums help.

Jim Czechowicz is in the Of- and deductibles. You will still fice of Public Affairs, Social need to pay co-payments So remember: it is not too late Security, Minneapolis MN though. to see if you qualify for some extra help with prescription â&#x20AC;˘ If you currently receive drug costs. More than three Supplemental Security Income (SSI) OR use a Medicare Saving Program (QMB, SLMB, QI) or the Minnesota Prescription Drug Program (MN-PDP), you must choose a plan by January 1 and you will automatically receive full or partial assistance paying for premiums, deductibles, and co-payments depending on income, resources and family size. Make a list of the medications you are taking, then use the tools on the Medicare Web site www. medicare.gov or call the Linkage Line 800-333-2433 to find out which plan is best for you. â&#x20AC;˘ If you do not fall into any of the above categories AND are eligible for Medicare, you will need to choose and enroll in the most appropriate plan for

you. Also, you may wish to apply for additional financial assistance. Make a list of the medications you are taking then use the tools on the Medicare Web site www.medicare. gov or call the Linkage Line 800-333-2433 to find out which plan is best for you.

For more information, please visit Medicareâ&#x20AC;&#x2122;s Web site www.medicare.gov, visit Social Securityâ&#x20AC;&#x2122;s Web site www.socialsecurity.gov, call Medicare 800-633-4227, call Social Security 800-772-1213, or call the Linkage Line 800333-2433. The Linkage Line is designated by the Centers for Medicare & Medicaid Services (CMS) to be the State Health Insurance Assistance Program (SHIP) for Minnesota and provides comprehensive impartial assistance to all Minnesotans with Medicare including persons with disabilities, seniors, people with End Stage Renal Disease, or ALS. Linkage Line hours have been extended to accommodate the increased number of requests for assistance. Hours are 8:00 am to 7:00 pm Monday through Friday and 8:00 am to noon on Saturdays. â&#x2013;

November 10, 2005

9

More Congregations Make Home Access Answers The Numbers Game: How Accessibility a Priority To Select A Contractor

by David Hadlich

A

ccessibility seems to have reached most areas of a personâ&#x20AC;&#x2122;s life.

Restaurants, movies theaters, and other places of business make reasonable accommodations for people with disabilities. This is not always true for places of worship. Older buildings, which we all know comprise a great many of the places of worship, are especially difficult to modify.

respondents being both truthful and honorable.â&#x20AC;? To be certified, a congregation needs to fill out a questionnaire and make the commitment to follow the Accessibility Congregation principles.

People with disabilities face many obstacles to regular worship attendance. Starting with reliable and regular transportation, which is a major concern, to the actual times of the services, many obstacles other than physical ones are faced.

When one arrives, the accessibility of the building, the size of the print in the bulletins, whether or not the service is signed, and whether or not people with disabilities can participate in all aspects of the service are other concerns.

The National Organization on Disability (NOD), based in Washington D.C., began a campaign in 1998 to recognize congregations committed to including people with all types of disabilities as full and active participants with the theme â&#x20AC;&#x153;Access: It begins in the Heart.â&#x20AC;? Since its inception, over 2,200 congregations are officially registered nationally, A quick phone survey of area with 59 in Minnesota. churches revealed that, even though many churches conBecoming an officially recog- sider themselves to be accesnized accessible congregation sible, other barriers may exist is accomplished by commit- for full participation by a perting to the following principles: son with a disability.

People with disabilities are valued as individuals, having Church plays a major role in been created in the image of many peopleâ&#x20AC;&#x2122;s lives. BelongGod; Endeavor to remove bar- ing to a congregation and parriers of architecture, communi- ticipating in the activities ofcations and attitude that ex- fered is no less important to a clude people with disabilities person with a disability than it from full and active participa- is to a person without a disabiltion; encouraging everyone in ity. It is critical to an individual the congregation to practice with a disability to not only be their faith and use their gifts able to attend, but to also speak, and talents in worship, ser- sing, and participate in ways vice, study and leadership. that many congregations ask (From the Accessible Congre- their members to do. gation Commitment form) Some neighboring congregaThe NOD does not have an tions have made a commitment enforcement of these prin- to share a van to help transport ciples, but Lorraine Thal, Pro- individuals, and other congregram Officer for the NODâ&#x20AC;&#x2122;s gations have â&#x20AC;&#x153;pairedâ&#x20AC;? people Religion and Disability Pro- with and without disabilities to gram, states, â&#x20AC;&#x153;We expect a long assist in just getting to church. term commitment from congregations to this program, and Congregations need not be we are very comfortable with perfect, just set achievable

goals and make a commitment to action. To join, a congregation needs to commit to using the gifts and talents of people with disabilities in worship, service, study and leadership.

There is no cost to join the Accessible Congregations Campaign. The NOD will send a packet of information to any congregation interested, and will send a certificate suitable for display. The congregationâ&#x20AC;&#x2122;s name and city will be listed on the NODâ&#x20AC;&#x2122;s Web site as an accessible congregation.

One of the 59 listed congregations in Minnesota is the Minnehaha United Methodist Church in Minneapolis. Being physically accessible for ten years, they joined in the Accessible Congregations Campaign six years ago, and have continuously made modifications to become even more accessible. From having flexible seating in the first three rows, to keeping a wheelchair onsite for visitors, this congregation has the backing of its national synod as well as the support of its members.

For more information on accessible congregations in your area, visit www.nod.org. Click on the Religion and Disability Program link about halfway down the page, and then click on the Accessible Congregations Campaign about halfway down the next page. This will bring you to a link for state by state listings. The Minnesota congregations listed are more than happy to talk to you about attending a service.

Look for a follow-up article next month. Access Press welcomes any input on this subject, as we may begin a listing of accessible worship spaces in future issues. â&#x2013;

by Jane Hampton, CID Dear Jane, We are renovating our home to make it wheelchair accessible for our son and have received bids, very different bids, from three contractors. Two of the bids include â&#x20AC;&#x153;allowances,â&#x20AC;? while the other does not. Having never done this before, what exactly is an â&#x20AC;&#x153;allowanceâ&#x20AC;? and how do we begin to evaluate each bid and select a contractor?

Barb, Apple Valley, MN Dear Barb, What a fun time for you, however, I sympathize with your confusion. Here are a few guidelines to assist you in reviewing the bids and selecting a contractor for your home access project: Apples-to-Apples: The first step in any successful bid process is to ensure the design, details and information going out to contractors for bid is equal in scope, enabling them to provide bids that compare â&#x20AC;&#x153;apples-to-apples.â&#x20AC;? This can be done by defining the design/access solutions, all the products and materials prior to requesting bids so you can ensure each contractor is bidding on the same information.

Professionalism and Accountability: If you are not already familiar with a contractorâ&#x20AC;&#x2122;s suitability for your project, ask them for a list of referrals â&#x20AC;Ś then follow through and contact them. Asking previous clients about a potential contractorâ&#x20AC;&#x2122;s experience working with home access, their sensitivity to the unique needs and schedules of a family with a member having a disability, finish quality, attention to detail, meeting timelines, sticking to the original bid, etc., are issues to be aware of before getting involved with them ... especially

if you donâ&#x20AC;&#x2122;t have an indepen- ideal bid is dent company assisting you the one that with project management. has the lowest overall base price and the It is also important that you highest allowance amount built request information from each into it. This combination proof the contractors to ensure vides the most money to go they are appropriately licensed â&#x20AC;&#x153;shoppingâ&#x20AC;? with when pickand carry insurance. ing out allowance items as well as the budgetary reassurance The Numbers Game: An al- of being the lowest bid on the lowance is a dollar amount that base items. includes the total project cost, but is set aside for a specific Your â&#x20AC;&#x153;Gutâ&#x20AC;? Level: Finally, item that has yet to be selected which contractor do you want or finalized (i.e., plumbing fix- working on your project and tures, flooring, etc). If you be in your home every day? donâ&#x20AC;&#x2122;t use all of the money re- Keep in mind that the person served for the selected item(s), from the construction company the remainder of the allowance that went through your home is reimbursed back to you. If, when the project went out-tohowever, your selections cost bid may or may not be the more than the allocated allow- person â&#x20AC;&#x153;swinging the hamance, you owe the additional mer.â&#x20AC;? Contractors and their amount to the contractor. sub-contractors often work as a team and may have a foreman Establishing the right amount that will be the main contact for allowances can be tricky through the duration of the and a â&#x20AC;&#x153;desperateâ&#x20AC;? contractor construction. If meeting this may play the game of provid- person is an important element ing you with an unrealistically in your decision, you should low allowance allowing him to request to meet those individupresent a â&#x20AC;&#x153;low bidâ&#x20AC;? hoping als who will be your primary you will select him based on contact. priceâ&#x20AC;Śso watch out! You may owe more money at the end of Good luck to you! Send us the project for selected items, photos when your project is which exceed the allowance done. â&#x2013; amount. Making selections prior to putting your project out-to- Do you have a question? Send bid can avoid this mistake. your question in and we will cover your questions in future Your Budget to Bank On: Ex- issues of Access Press. Please amining the numbers can tell a send them to access@Access story; in a perfect world, the Press.org or call 651-644-2133.

A picture is worthâ&#x20AC;Ś

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651-454-5899 www.axisremodeling.com

10

November 10, 2005

The MN Direct Support Interviewing Workers Professional Association With Obvious Disabilities

by Dan Woog, Monster contributing writer

by Lance H. Hegland

W

e all have the same inborn need for a sense of self fulfillment, pride, accomplishment, and well-being. Those of us experiencing the effects of aging or disability, often referred to as “service participants,” desire to lead self-directed lives, to contribute to our communities, and to encourage attitudes and behaviors that promote inclusion in those communities. Some of us just need a little assistance now and then to reach these goals. We receive the support of personal care assistants (PCAs), home health aides (HHAs), nursing assistants (NAs), homemakers, and specialized transportation drivers.

These front line supporters, fairly recently termed “Direct Support Professionals” (DSPs), strive for excellence.

Until recently, DSPs have not had a strong collective and unified voice regarding issues impacting their industry. Ex-

periencing high staff turnover; burnout; low social status; limited educational, training and career opportunities; and poor wages and benefits, the life of a DSP was void of organized opportunity for change.

Now, a relatively new national organization has developed roots, and a local associated chapter, here in Minnesota.

The National Alliance for Direct Support Professionals (NADSP) and the Direct Support Professional Association of Minnesota (DSPAM) are making headway in forming a network of DSPs. They are quick to point out that they are not a union and have no intentions of forming one. Instead, they are an organization of professionals charged with a mission to increase public image and knowledge for their industry by striving for mutual understanding of the expected Code of Ethics, training, and credentialing. Much like the

doctors’ American Medical Association, they are seeking a consensus among providers, advocates, families, and legislators as to what the excepted norm is to be, with hopes of growing into a respected professional association.

Besides Minnesota’s own DSPAM group, the NADSP has approximately 24 affiliates in 16 other states such as Louisiana, Massachusetts, Michigan, Missouri, Montana, New Mexico, New York, Ohio, and Tennessee, just to name a few.

These national and state networks are a diverse coalition of organizations and individuals —a gathering of representatives from fields including mental health, developmental disabilities, physical disabilities, child welfare, education, plus many others in the human services community.

J

oe HR Guy looks forward to interviewing his next candidate. Her resume sparkles. However, when she arrives, he’s surprised: The candidate is in a wheelchair.

She can’t maneuver herself around the heavy boxes stacked near his door, so he suggests a nearby conference room. The table is the wrong height, so she can’t fill out the forms he needs. To break the awkward silence he says, “Do you mind my asking what happened to you?”

The interview is over before it begins. The ideal candidate ends up working for his competitor. And though Joe HR Guy is surprised, workers with disabilities are not. As recruiters and hiring managers cultivate top-notch staffs, they cannot afford to make Joe HR Guy’s mistakes and miss out on this talent pool.

The core belief of the NADSP DSPAM - cont. on p. 19

Overlooked Talent Data from the 2000 US Census shows that nearly 57% of the 30.6 million Americans with disabilities age 21 to 64 were employed. However, workers with disabilities and their advocates note that employers continue to either overlook or look down on this large pool of talented workers. Many problems begin at the inter-viewer’s door, the moment a physical disability becomes apparent.

people with disabilities or considered the possibility that they might apply. Every office in a building should be wheelchair-accessible. At the very least, the employment office must be.

Addressing the Disability During the Interview Interviewers should be proactive, Klare says. “Engage the interviewee,” he suggests.

“Nonverbal communication says a lot. Shake hands—and if the other person can’t shake, just touching him is important.”

The customary “take a seat” greeting can be adapted by motioning for someone in a wheelchair to move closer.

“It’s so simple and basic,” says Jeff Klare, CEO of Hire Disability, an employment company.

“People with disabilities are human beings. The focus has to be on the person, not on the disability. You speak person to person, not person to wheel- When the interview begins, chair or person to blind per- the disability should be a nonson.” issue. Instead, the focus should be squarely on the However, as Joe HR Guy dem- applicant’s skill set and qualionstrates, that change in fo- fications for the job. cus won’t happen if a company has not already hired Interviewing - cont. on p. 19

Spector vs. Norwegian Cruise Lines Case Decided

by Kathy Hagen

I

ssue 1: Do the Title III provisions of the Americans with Disabilities Act (ADA) cover cruise lines, and are cruise lines defined as a public accommodation for purposes of the ADA? Answer: Yes. Issue 2: Are there limitations on Title III’s coverage of cruise lines?

Answer: Yes. Foreign cruise lines are covered only insofar as a ship sailing in American waters with American passengers can modify policies and procedures so as not to discriminate against persons with disabilities. A cruise liner need not remove architectural barriers if such removal would promote a possible threat to the safety of others, if such removal and restructuring of barriers would put the ship in noncompliance with international laws regarding safety at sea, and if such barrier removal would “interfere with the internal governing policies of the ship.”

Almost all cruise ships sailing round trips from American seaports are registered in other countries. Most of the cruise lines, even those with a principal place of business in the United States, have their corporation registered in another country. Norwegian Cruise Lines is incorporated in Bermuda, has its principal place of business in Miami, and the two ships in question in this case are registered in the Bahamas.

This case was filed by a group of disabled persons who attempted to sail two different Norwegian Cruise Lines ships sailing out of Houston, Texas.

These passengers were subjected to discriminatory policies: •they were forced to pay an extra charge to be carried on the ship because of their disabilities; •they were forced to sign waivers of medical liability for the cruise line whereas non-disabled persons did not sign such waivers; •they were not allowed to travel without a companion; •they were informed that the ship’s crew reserved the right to put them off the ship if they interfered with the “comfort” of other passengers; and, •the life boats and other procedures for vacating the ship in case of an emergency were located in inaccessible areas.

covered. However the District Court held that cruise lines were not covered by the requirement to eliminate architectural barriers. In part, the district court argued that since cruise lines were not actually mentioned in the list of businesses covered in the ADA, and since the regulating agencies (Dept. of Justice, Dept. of Transportation and the Architectural Barriers and Transportation Compliance Board) had not yet promulgated guidelines of access governing cruise ships, they could not be held to a standard of removing barriers as other businesses were required to do. Therefore the district court dismissed the portion of the claim dealing with removal of barriers, but denied Norwegian’s request to dismiss the rest of the claims dealing with disability discrimination.

The 5th circuit court of appeals took a very straightforward stand: Cruise liners were not listed as a covered private entity in the ADA, and therefore they were not covered. The Court of Appeals dismissed the entire case.

ring opinion but separated herself from one part of the majority argument, this was also signed by Justice Breyer.

Justice Thomas wrote an opinion concurring in part with the majority, but he also concurred with the dissent written by Justice Scalia arguing that public accommodations provisions had no application to cruise lines.

What This Decision Means Well, the good news is that the court allowed for the definition of “public accommodations” to include a business not actually listed in the long list of covered businesses. The danger of listing examples of covered businesses was that the court, when faced with something not included would argue that Congress had the opportunity to include such a business and did not. Thankfully, the court did not decide the case on that basis, and determined that cruise lines constituted a public accommodation both with regard to its being a private business and a provider of public transportation.

The plaintiffs also asserted that most cabins were not accessible at all or only minimally accessible, that doorsills at most entrances in the ship were too high for someone using a wheelchair or scooter, and bathThe court held that: rooms, showers etc. were inacThe Supreme Court granted • the cruise lines could not discessible. review in this case, and it pub- criminate against persons The case was filed in the dis- lished its decision on June 6, with disabilities when a moditrict court of Texas. The judge 2005. The majority opinion fication of policies and procefound that, even though the was signed by six of the nine dures would allow them to long list of covered private justices, but the decision was participate equally in enjoyentities under Title III defining not a comfortable one for them. ing the ship; a “public accommodation” did Justice Kennedy wrote the • architectural barrier removal not include cruise lines, such majority opinion, parts of which would not be required where cruise lines serving mostly five other justices joined. Jus- such removal would put forAmerican passengers were tice Ginsburg wrote a concur- eign or domestic ships in con-

flict with policies set forth inter- would have to weigh the risks of: nationally regarding construc- a) Subjecting domestic cruise tion of ships for safety at sea; lines to stricter standards of • removal of architectural baraccessibility than foreign riers in compliance with the ships cruising in American ADA was not required if it waters and carrying Ameriinterfered with the ship’s incan passengers were subternal governing policies. jected to; or b)Subjecting foreign ships travWhile the court held that each eling in American waters to case would have to undergo standards that conflicted an individualized analysis to with those of other coundetermine whether the ship was tries or international law. in compliance with the ADA, Justice Kennedy also left the There will definitely be more door open for the court to de- cases brought to the court retermine ultimately that archi- garding cruise lines, and the tectural barriers would always makeup of the court will deficonflict with international laws nitely determine the outcome or with the internal order gov- of future cases. For now, it erning the ship, and that such would seem that if a cruise liner barriers would then not have can raise arguments that reto be removed. moval of architectural barriers would conflict with internaJustices Ginsburg and Breyer tional law or with the ship’s took exception to this last state- own internal policies, (and it’s ment arguing that internal poli- not clear how high their burcies should have no more, and den of proof is) then such barno less, weight with regard to riers can remain in place even if ships than management poli- they could be removed withcies do with regard to other out much expense. private businesses. Justice Thomas wrote his own opin- So, while it appears that forion in which he was unwilling eign and domestic cruise lines to state that a cruise line would are covered in the definition of never constitute a public ac- public accommodations of the commodation under the ADA, ADA, and while policies which but he concurred with the dis- specifically subject persons senting opinion that the ADA with disabilities to discriminadid not apply in this case. tory treatment will not be tolerated, ships may not have to The dissent argued it would remove barriers. It’s unclear take a strictly declared inten- then how many more people tion by Congress to include with disabilities, or senior citicruise lines in the ADA’s list of zens who use scooters, will be public accommodations. When able to enjoy cruises. As usual, making such a decision, the dis- my final line is: stay tuned for senters stated that Congress further news. ■

November 10, 2005

AWARD - Cont. from p. 1

Exceptional Leadership Awards From USBLN

T

he US Business Leadership Network (USBLN), a national employer organization, announced the winners of its 2005 Exceptional Leadership Awards at its annual conference held November 1-3 in Pittsburgh, Pennsylvania. The USBLN is a national organization that supports the development and expansion of BLNs across the country and serves as their collective voice.

Tim Benjamin, Jeff Nygaard, and Bionett (Ron) Haron enjoying the award banquet. developmental disabilities and tive Network, Metro Work their families.

Center, Inc., Metropolitan Center for Independent Living, If you are not a member of the Inc., MN Assoc. of CommuMN-CCD, now is the time to nity Mental Health Programs, join this great coalition of or- MN Assoc. of Community ganizations and help them to Rehabilitation Organizations, become stronger and more MN Assoc. –Self Help for Hard successful in the next legislative session. For more information on the MN-CCD, please contact John Tschida at the Courage Center at 763-520-0533 (johnt@courage.org).

When you join, you’ll be among some of the best organizations in Minnesota that are working for the disability community. MN-CCD members include: Accessible Space, Inc., Access Press, Advocating Change Together, Alliance Healthcare, Arc Great Rivers, Arc Hennepin-Carver, The Arc of Minnesota, ARRM, Assistive Technology of Minnesota, AXIS Healthcare, Brain Injury Association of Minnesota, Children’s Mental Health Partnership, CILNM, Courage Center, Disability Services-Hamline University, Fraser, Freedom Resource for Independent Living, Inc., Gillette Children’s Specialty Health-care, Hemophilia Foundation of Minnesota, IAPSRS-MN, Independent Lifestyles, Inc., IPSII Inc., Lifetrack Resources, Mental Health Association of Minnesota, Mental Health Legisla-

11

Multiple Sclerosis Society-MN Chapter, PACER Center, State Advisory Council on Mental Health, Southwestern Center for Independent Living, STAR Program, United Cerebral Palsy of Minnesota.

Business Leadership Networks (BLNs) are non-profit employer organizations promoting education on the business case for the inclusion of people with disabilities in the workforce and marketplace.

The Exceptional Leadership Awards annually recognize employers, chapters and partners that emulate disability best practices. There are 43 chapters in 32 states, including the District of Columbia.

Medtronic received the “Lead Employer of the Year” Award for its outstanding support of the Minnesota Business Leadership Network. Medtronic is the world’s leading medical technology company, headquartered in Minneapolis, Minnesota. They have worked with the Governor’s office to have Disability Mentoring Day proclaimed in the state of Minnesota. Medtronic also created an employee resource group called “ABLED” which stands for Awareness Benefiting Leadership and Employees about Disabilities. This internal employee network supports events throughout the year to bring awareness about disabilities to Medtronic and the community.

JoAnn Cardenas-Enos, the emcee for the night.

The Oregon Business Leaderof Hearing, MN Disability Law MN-CCD—Thank you for be- ship Network and the MiamiCenter, MN Habilitation Coali- ing a primary resource for all of Dade (FL) Business Leadertion, MN HomeCare Associa- the people that you serve! ■ tion, NAMI-MN, National

Phyllis Benjamin congratulating her son, Tim Benjamin, editor of Access Press, on a very successful and fun evening.

mental Disabilities Council and The Alabama Governor’s Committee on Employment of People with Disabilities, a program of Alabama Vocational Rehabilitation Services.

The Pennsylvania Developmental Disabilities Council was nominated by the Pennsylvania BLN for its funding support for the past six years in support of their efforts to proKeynote speaker, vide education and networkJennifer Sheehy-Keller ing opportunities for employship Network both received ers regarding the employment awards for the “Chapter of the of people with disabilities.

Year.” The Oregon Business Leadership Network crafted a The Alabama Governor’s business case for inclusion of Committee on Employment of people with disabilities and People with Disabilities was worked with the Oregon Busi- nominated by the Alabama ness Council, Congressional BLN for their support in the leaders and the Governor to development of the ABLEhave “Accommodation as a NETWORK, a resource for Business Case” added to the Alabama employers to post Oregon Business Plan. They jobs and identify qualified aphave also created employer plicants for open positions. resource materials that can be They have also provided trainaccessed through the Oregon ing programs for employers Business Leadership Network regarding disability etiquette Web site at www.obln.org. Or- and consulting on accommoegon Health Sciences Univer- dation issues. sity, Oregon’s largest private employer, serves as the lead The USBLN will hold its 2006 employer for the Oregon Busi- Annual Conference in Minneness Leadership Network. sota and will announce the 2006 Exceptional Leadership The Miami-Dade (FL) Busi- Awards at the conference. For ness Leadership Network de- more information, contact the veloped an Employer Aware- USBLN at www.usbln.com or ness Campaign with funding Katherine McCary, President, from private employers and the USBLN at katherine.mccary@ Florida Agency for Persons suntrust.com. with Disabilities. Figures show that the number of people with To get more information about disabilities securing jobs has the USBLN 2006 Annual Conmore than doubled in the Mi- ference that will be held in ami area since the campaign was Minnesota or any information launched. Resources for em- about the Minnesota BLN ployers can be found on the (MN-BLN), please contact Web site at www.myabilities. Terri Ricci at 651-644-2133 or org.

Greg Lambert at 612-727-7177, or visit the MN-BLN Web site Two organizations received at www.mnbln.org. ■ “Partner of the Year” Awards, The Pennsylvania Develop-

12

November 10, 2005

MSCOD Annual Awards Luncheon

O

ver 150 people from around the state attended the Minnesota State Council on Disability’s Annual Awards Luncheon on Thursday, October 27, 2005. The event recognized individuals and organizations committed to eliminating societal and personal barriers that exist for Minnesotans living with a disability.

in the U.S. Department of Education delivered the keynote address. Ms. Sheehy-Keller discussed her experience trying to find employment as an individual with a disability.

She also talked a little about steps Back Row: David Hadlich, Fred Benjamin, Terri Ricci, Cliff Poetz, the Bush AdminManny Steinman, Kay Willshire, John Karrigan. Front Row: Tim has Jennifer Sheehy-Keller, the istration Benjamin, Mary Kay Kennedy and Kathy Sanders.

President’s appointed Special taken to increase Assistant for Employment to employment opportunities co-chairs of the Minnesota • Community Award: Steve the Assistant Secretary of the available for individuals with Consortium of Citizens with Erickson, owner of LanesDisabilities. Their determinaOffice of Special Education disabilities. boro Minnesota, offers tourtion at the state legislature this and Rehabilitation Services ists with disabilities the pros(OSERS) and Acting Deputy A special award for Outstand- past session resulted in instrupect of taking part in stimuCommissioner of the Rehabili- ing Achievement was given to mental changes in services for lating outdoor activities. tation Services Administration Joel Ulland and John Tschida, Minnesotans with disabilities.

Cliff Poetz received the first • Distinguished Service ever Governor Award. Cliff is a Award: Karen Quammen, the co-founder and former PresiWorkplace Inclusion Coordent of People First – Minnedinator at Medtronic, consota, a self-advocacy organicentrates her efforts on atzation for persons with distracting diversity in the workabilities. As one of the first place, especially employself-advocates in the state, Cliff ment of persons with dishas helped many individuals abilities. She has also dewith disabilities find their own signed mentorship opporvoice. Cliff continues be a voice tunities for students with for the disability community disabilities in Minnesota. on both state and national issues.

• Chair’s Award: Steve Thovson, Director for the The State Council would like to Southwestern Center for Incongratulate this year’s recipidependent Living in ents and nominees: Marshall MN, has been ac(Left) Emcee, Tom Hauser, KSTP, and tive in the independent livMSCOD chair David Schwartzkopf • Employers of the Year: ing movement for over Novel Cup & Northern twenty years.

Lights Bookstore offer individuals with disabilities op- Other nominees for the portunities to do satisfying Governor Award included: work and provide valuable • Ron Biss is a strong advoservices to their communicate for accessibility in the ties. state. His contributions have resulted in better access for • Entrepreneur Award: Harall people throughout his ris Communications is a leadcommunity. ing source for sign language books, TTYs, amplified tele- • Judge Catherine Anderson phones, signalers and vibratis a vocal leader in the legal ing clocks. community. She has continued to fight for the rights of • Access Award: Stageberg, all persons in the commuBeyer, Sachs, Architects renity and workplace. cently designed the changes for the Elmer L Andersen • Tom Carey’s advocacy on Library on the University of local transportation and acMake a difference in someone’s life. Please visit out showroom because...

Minnesota Minneapolis cess issues has resulted in "We are going to change the way you think about cabinet organization!" campus to ensure its acceschanges both at the city and sibility for everyone. state level.

• Access Award: Bobbi • Joel Ulland and John Tschida Cordano, Director of Disabilsuccessfully pushed for imity Services at the Univerportant provisions of the sity of Minnesota, made Minnesotans with Disabilavailable countless oppority Act during the 2005 legtunities for students, faculty islative session. Without and staff with disabilities. their efforts, many services vital to Minnesotans with • MediaAward:TimBenjamin, disabilities would have been editor of Access Press, endecreased or cut. sures issues relating to the disability community are ac- The Council would like to thank curately portrayed by the everyone who attended the media and ensures that the luncheon, making it the most disability community has a successful yet. We hope to strong voice in Minnesota. see everyone again next year!

■

4th Annual Hmong Resource Fair

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he 2005 Hmong Resource Fair focused on providing resources and assistance to the new Hmong refugees, their sponsor or host families and other providers. Bilingual staff from more than 110 organizations/ agencies were available to provide assistance to members of the Hmong community and to those who work with them.

Information related to health and nutrition, mental health, education, employment, legal and government services, and many other areas of services, were available to the participants.

School board member Kazoua Kong-Thao and Bo Thao of the Federal Reserve Bank served as emcees for the event.

Guest Speakers at the Fair included St. Paul Mayor Randy Kelly, St. Paul Mayoral Candidate Chris Coleman, and School Board members Elona StreetStewart, John Broderick and William Finney. Entertainment on the main stage was pro-

Saint Paul School Board ViceChair and 2005 Hmong Resource Fair Planning Committee Co-Chair Kazoua Kong-Thao addresses the crowd with Saint Paul School Board members Elona StreetStewart, John Brodrick and William Finney with her on stage. made the event such a success.

Financial Sponsors of the 2005 Hmong Resource Fair included: UCare Minnesota, Medica, and U.S. Bank. Partners included Hmong Cultural Center, St. Paul Public Schools, MN Dept. of Human Services, MN Dept. of Revenue, Ready 4 K, MN State Colleges and Universities, UCare Minnesota, Boys & Girls Clubs of the

Information resources on a wide range of educational, health, legal, housing and employment services are shared with the Hmong community at the 2005 Hmong Resource Fair. vided by the Hmong Cultural Center dance troupe, the Hmong Cultural Center Qeej Troupe and Hmong spokenword performers F.I.R.E.

Twin Cities, Portico Healthnet, Federal Reserve Bank of Minneapolis, Hmong American Partnership, Southeast Asian Community Council, Council on Asian-Pacific MinnesoMark E. Pfeifer, Director of the tans.

Hmong Resource Center and co-chair of the 2005 Hmong Editors Note: Access Press Resource Fair stated: “The provided over 800 copies of 2005 Resource Fair was very, the October issue of Access very successful at accomplish- Press for the participants. The ing its mission of getting edu- October issue included the cation, health, employment story “Every Parent Wants to and other information re- Help Their Child” written by sources to the Hmong com- Dao Xiong of the PACER Cenmunity. We are particularly ter and our Directory of Orgapleased at how effective our nizations. It is our hope that outreach efforts were to the the Directory of OrganizaHmong who have arrived in tions and the story from Dao Minnesota from Wat Tham Xiong will encourage the Krabok over the past year.” Hmong community to advoKazoua Kong-Thao noted cate for the services that are that it was the giving nature of available to them if there is a the Hmong community that need due to a disability. ■

Computerized Desktop publishing: Brochures Catalogs Direct Mailings Flyers Newsletters Newspapers Resumes and more!

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November 10, 2005

13

Positive Forces, All About Art Creative Energy Features Blind Artists

by Nancy L. Blakestad, Ph.D.

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People Incorporated’s Annual Art Show— Artability at APOLLO

n many occasions, eyesight has little or nothing to do with vision, especially for artists who are visually-impaired.

From Gorham, ME to Minneapolis, MN, visually-impaired artists who have exhibited their work and won awards in the process will tell you this is true.

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ne might assume an art show featuring artwork by those with mental illness would focus on mental illness—its symptoms, struggles, and pain. But Artability at APOLLO is about something much bigger. It’s about artists and art-lovers coming together to celebrate the very essence of what makes a community strong—the sharing of their skills and talents for the benefit of the common good. And it’s about making space in our society for everyone—including those of our friends, neighbors, and family

by Herb Drill

All five of the following artists had their work invited to be Shelley Jutila shown at the All About Art at that finally someone under- MossRehab juried exhibit. stands who I am.”

Vue was born in Laos and spent three years in a refugee camp before coming to the U.S. at the age of seven. Diagnosed with major depression at a young age, things became worse for him following the death of his father a number of years ago.

“My world really collapsed— I felt really confused, and to escape I started to draw—at first because I wanted to draw a picture of my father. But then I discovered that drawing helped me make sense out of everything. Artability has Vue Vang helped end my isolation—the members—who experience workshops and the exhibit let mental illness. me focus on something positive. I am so grateful to those The main purpose of the event who support Artability.” is to celebrate the creativity of those with mental illness and Shelley Jutila came to recogthe contributions they make to nize her talent just a year or so our communities. Many in so- ago. “I like to do knitting, ciety still see those who suffer beadwork, and weaving—but from mental illness through the my sister and mother were the lens of stigma, and getting away artists in the family. One day an from the “mentally ill” label is art teacher suggested I try one of the toughest drawing—at first challenges for those without looking at who have the diswhat I was doing, a ease. For many arttechnique that keeps ists with mental illyou from trying to be ness, the very properfect. It turned out cess of doing art much better than I gives them a place thought—it was exwhere they can estraordinary. I still do Vue Vang's chimp cape the labels and all of my drawing that express themselves—whether way.” it’s pain or joy, confusion or exhilaration, heartache or A native of Wayzata, Shelley hope—and see themselves in studied art and music in a new light. Artability is also a Marshall and wanted to go to place where we, as a commu- graduate school, but bipolar nity, pause to listen to what disorder got in her way at the they have to say—and see age of 27. “It wasn’t really obthose with mental illness in a vious that it was bipolar disornew light, too. der because my high phases are relatively short—it’s called Over 85 artists collectively ex- hypomania,” Shelley explains. hibited over 330 pieces of art- “I tend to be mostly in the work at last year’s three-day depressed side. I’ve felt really show, and for many artists, the suicidal sometimes—it’s program is the start of some- scary, and I’ve been hospitalthing big. Artist Vue Vang ex- ized quite a few times. Luckily, hibited his artwork for the first I have a wonderful husband time last year—and won first who really supports me, and prize in drawing and sold his that helps a lot.” first piece of art. “It was the first time I really took myself Winning the Artability t-shirt seriously as an artist and rec- and poster contest this sumognized my abilities,” says Vue. mer has helped to transform “I feel at home when I do art, Shelley’s view of herself. “I and being with people with was hoping to win, but when I mental illness makes me feel Art - cont. on p. 20

Riding the MTC#5 Minneapolis’ Tara Arlene Innmon won with Riding the MTC#5. Ms. Innmon relates, “I want to show what the world looks like to a person who is losing vision and how the feelings of grief and anger lead to transformation and acceptance. It was like being in a fog that got thicker and thicker.

The definition of beauty changed for me from sharp, brightly-colored visual images to lights and colors with no shape, then to the tactile sense of shape and texture. I believe many of my dreams have universal elements that assist in the process of growth and healing. I have painted these images and now write them into stories.”

Each piece is woven of off- stops providing me with both white and gold fiber and could pleasure and ideas.” be used to hold dried flowers.

It’s shaped like a square-sided vase with a narrow neck and a somewhat wider lip above the neck.

On the other hand, Carmelo Gannello , from Oak Park, IL, is known for his paintings of parks, marine life, and city living. The repetition of circles in his work symbolizes the cataracts that have transformed his vision. He recalls that “when I became blind, I had to change my thinking. I remember going to the art institute of Chicago and [my] teacher, Capsalas was his name, told me, `Why don’t you do what you see?’ I said, `I see floaters’ and I thought no one is going to be interested in floaters, and I did one and I liked it so much. I continued doing eye floaters. I thought that would be an ideal thing for me to do, after all, I’m visually impaired, so how can I explain to people what I see?

I saw these floaters, they were

Working On My Tan Meanwhile, Frank Valliere, of Gorham, ME, had his oils on pastels Workin’ on My Tan used to promote the opening reception for A Matter of Perception 2005 Fifth Juried Exhibition by Artists with Disabilities sponsored by the Center for Community Inclusion and Disability Studies. A supporting display was related to VSA Arts of Maine, which provides a community-based opportunity for artists with disabilities living in Maine to gain artistic exposure and exhibition experience.

I’m legally blind with acute myopia,” Valliere explains. “If one must have a disability, this is one of the easy ones to deal with, especially for an artist.

You get great colors and pretty good clarity. It’s just that everything is so much smaller . . .

When it comes to driving cars and catching baseballs, I’d rather have regular vision, but then I’d just be a regular guy.

Roughly half of the known art-

ists throughout history have had some sort of visual impairment. The ability to produce art is a basic human function.

My biggest problem is figuring out how to be an artist and useful to society at the same time.”

In 1979, All About Art at MossRehab was the brainchild of a group of MossRehab volunteers and staff members, who wanted to make a very strong statement about the talents and commitment of people with disabilities. Friends of Moss Auxiliary took the exhibit on as part of its advocacy program.

MossRehab is part of the Albert Einstein Healthcare Network and is a 147-bed facility in Philadelphia. MossRehab offers comprehensive care to people with conditions including stroke, brain injury, orthopedic and musculoskeletal disabilities, spinal cord dysfunction, pulmonary disorders, amputations, and other forms of disability.

All About Art will run until midJanuary. Art exhibit funds benefit the Family Hospitality Suite at MossRehab at Elkins Park, PA. ■ Herb Drill, is a charter member of the now international in membership Society of American Business Editors and Writers. His e-mail address is herbertdrill@cs.com.

The Forest real to me. He put the floaters in the midst of a piece he calls The Forest, where things “aren’t really specific. The line isn’t strong, it’s fuzzy, the haze, in a night forest. I tried to get that effect.”

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Each By Each Dayton, OH’s Martha Cowden has been totally blind for 30 years. She notes: “Since I have no vision, all of my work is tactile. Texture is a very important part of my work. I enjoy the entire process used to create my hand-built pottery pieces.

Manipulating the spinning yarn is very satisfying. I use clay, natural fibers, and handspun yarn in various combinations to achieve different effects, and I rely totally on my sense of touch to create oneof-a-kind pieces.” Her Each by

Gannello lost his sight at the age of 36 and used to be a regionalist painter, “but as my eye condition worsened due to detached retinas and Macular Degeneration, I now see circles and blobs in my vision.

I use the circles to inspire my work, turning my art into the theme, Art of the Eye. Today, my work is enchanted by circles, and because I really see them in my vision, I capture them as they float by. I work them into my art in such a way as to make them attractive and an asset to what I am doing, proving that anyone with a handicap can execute art.

And do it well, too, including Tracy Mosman, of Indianapolis, says the “activity of drawing has long been a personal favorite. I think it has always charmed me because of its simplicity and versatility. It never

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14

November 10, 2005

Self Advocacy E-Scan

SEE3 Teaches Disability Awareness

by Nikki Wee

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ing to break that attitude.” t the announcer’s cue, three people in wheel The University chapter of chairs dashed for the DSCC was the first disabled finish line. As the lead wheelcultural center in the nation, chair made its way toward the and has 200 to 300 members, end of the course, Pooja Garg but there are at least 840 regisgot out of her wheelchair in a tered students with disabilihumorous stunt and started ties at the University, accordpushing it toward the finish ing to group members. line. “As you can see, I’m a much better wheelchair pusher The group does more than orthan a wheelchair rider,” said ganize Disability Awareness Garg, a business and marketMonth. To increase the level ing education senior. “But I Basketball Shooting Competition of disability awareness had fun, even though I activities that a disabled per- ability, see my disability, and throughout the year, DSCC cheated.” son might experience in every- also see me as who I am and The wheelchair race was just day life. The event featured a what I can do,’” Lukanen exone of many events the Uni- manual wheelchair competi- plains. “We want to increase versity of Minnesota’s Dis- tion, a manual wheelchair bas- awareness that there are many abled Student Cultural Center ketball contest, a powered students with disabilities at (DSCC)hosted September 30 wheelchair obstacle course, the U and that we are a vital to kick off their on-campus and blindfold basketball- piece of this campus. We also want to acknowledge that the celebration of Disability shooting games.

DSCC does exist on this camAwareness T h r o u g h o u t pus and is a resource.”

Month(DAM) October, DSCC in October. hosted a vari- First-year geology student Adrienne Latimer and Tien Dang ety of events as Mohd Faris Hashim said he compete in a manual wheelchair “My friend part of the larger saw the event as he was walk- race on Northrop plaza. told me to SEE3 project, an ing from a class and thought come out a w a r e n e s s it looked like a lot of fun. He also hosts monthly Lunch & here,” said c a m p a i g n said it ended up being an edu- Learns, where the group Garg, who is meant to give cational experience as well chooses a different disability also a member of the DSCC. Members and guests of the Dis- the campus when he participated in blind- to highlight and discuss every lunch time. ■ “I didn’t abled Student Cultural Center community a fold basketball. know about it competed in a wheelchair race chance to expeat first, but Friday on Northrop Plaza. The rience activities “It’s really hard. You didn’t Source: Copyright 2005 The anything that event was part of the “See3” cam- that a disabled know anything at all. You just Minnesota Daily paign, “See Disability, See Abilperson might throw and hope you has to do ity, See Me,” launched by the experience in make a basket,” he said. with the dis- group in March. his or her every- “I really hope more ability serday life. As part of a larger people can get involved, vices, I support.”

According to DSCC co-direc- “SEE 3” awareness campaign, it helps us to realize that tor John Lukanen, the day was DSCC made two giant ban- even people without dismeant to give the campus com- ners—one hanging from abilities aren’t perfect.” munity a chance to experience Northrop Auditorium facing Coffman Union, and another McKinney said he on Church Street in front of hopes to change the atMurphy Hall. The banners titudes that some people read: SEE 3, See Ability, See have toward people with Disability, See Me.The disabilities. month’s theme, “See Ability, See Disability, See Me” is “When people see me meant to help people realize walk with a cane, they University of Michigan graduate stuBiology junior Ryan Chicoine that there is more to a people see me walking with a dent Gabrielle Tremblay, right, comthan their disabilities, DSCC cane, not me as an indiattempts a blind free throw Friday petes in the wheelchair obstacle course board member Uriah McKinvidual,” McKinney said. on Northrop Plaza during an while General College professor Murray event sponsored by the Disabled ney said. “I think it’s an impor- “Even when there isn’t Jensen looks on Friday during the DisStudent Cultural Center to kick tant message to the commu- that visual symbol, abled Student Cultural Center’s event to off Disability Awareness Month. nity,” he added. people tend to get a dif- kick off Disability Awareness Month.

Participants could also play a ferent attitude when they Tremblay crossed the finish line with the game of blind catch and take part “What we are saying [with the learn about a disability. fastest time of the day. in a wheelchair race.

“SEE 3” slogan] is ‘See my SEE3’s campaign is try-

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hough the concept of self-advocacy for people with developmental disabilities has been growing for over 40 years, it is clear that many issues remain as people with disabilities and their allies look to the future of self-advocacy in Minnesota.

A self-advocacy environmental scan conducted in the spring of 2005 consisted of interviews with 47 self-advocates (people with developmental disabilities) and professionals. The results of the environmental scan were conclusive.

Another key issue that emerged from the environmental scan was the lack of understanding of the current structure of selfadvocacy. Though it was believed, especially by self-advocates, that self-advocacy has grown (as attested to by the rise in conference attendance), there remains a general consensus that the efforts toward a self-advocacy movement are sporadic and divided.

“There is no state structure, no region structure, not money structure, not state-wide leadership structure, no office structure, no issue campaign structure.” While the efforts of individual groups were clearly identified, the overall consensus was that there is little in place on a broader level that unifies self-advocacy.

“Funding is the number one issue…there is no institutional source of funding!” was the key issue identified in the scan.

The fact that there is no systemic form of funding or resources to develop an infrastructure to support selfadvocacy was identified over and over as problematic to not only the growth of selfadvocacy but the current abil- Alex Rodriquez being interviewed for E-Scan ity to sustain self-advocacy in Minnesota. A Minnesota state team was established in September of The basic lack of funding, ac- 2004 to bring issues of critical cording to many of those inter- importance in our state to a viewed, continues to have its national meeting in Washingroots in the lack of visibility of ton DC one year later. Minneself-advocacy and the deep sota identified lack of support discrimination that continues for self-advocacy as a critical to exist, especially around issue. The results of the scan people who carry the label of will be used to launch efforts to Developmental Disability. strengthen the support of self“Many people with disabili- advocacy in Minnesota. ties feel somewhat ashamed, depressed, ridiculed, and feel The Self-Advocacy Environthey are humiliated. People are mental Scan was conducted limited in how they view us.” by Susan O’Connor PhD and While many believed there is summarized here by Mary Kay lip service to include people Kennedy of Advocating Change who carry the Developmental Together. Call Mary Kay Disability label, they were clear Kennedy at 651-641-0297 for a that discrimination plays a key copy of the environmental scan role in lack of visibility, thus in its entirety or to find out how lack of a sustained effort to to join the newly forming committee to address issues idenchampion self-advocacy. tified in the e-scan. ■

National Disability Summit

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group of 11 national developmental disability groups joined forces to form what is now called the Alliance for Full Participation (AFP). The objective of AFP is full realization of the vision of people with developmental disabilities living meaningful and personally satisfying lives in their communities of choice.

Voices, One Vision. The gathering of 2,400 was an opportunity for self-advocates, family members, policy makers and professionals to come together to establish national strategic social and policy goals, and to create a pro-active and responsive action plan for the future.

Service Professional status.

Carol Robinson and Kelly Lee of Advocating Change Together led a Summit workshop on building leadership via community organizing. The session addressed the need to compel those who benefit from the disability leadership to inMinnesota was well repre- vest in strengthening the leadsented at the summit carrying ership base. the message of our state’s AFP sponsored a National “critical issues” related to sup- The Summit was the first major Summit September 22-23, 2005 port of self-advocacy, individual event of its kind in the United in Washington DC: Many control of budgets, and Direct States and marks a significant

step forward in the disabilities field in that self-advocates worked in tandem with other stakeholders to establish a national social policy agenda aimed at improving their own lives.

For information about the AFP action plan or to get involved with Minnesota’s efforts, call Cliff Poetz at the Institute on Community Integration at 612625-0171. ■

Carol Robinson and members of Advocating Change Together use the story of the Little Red Hen at the AFP conference to demonstrate the idea that everyone needs to invest in building the self-advocacy leadership base.

November 10, 2005

15

Paraplegic Yoga Teacher Open House Showcases Receives Judd Jacobson Hennepin Libraries’ Award Assistive Technology

by Mary Tellers

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n October, Orono resident and Minnetonka nonprofit business owner, Matthew Sanford, received the Judd Jacobson Memorial Award for his work with yoga and disabilities at a recognition luncheon at the Golden Valley Golf and Country Club.

The award is given annually through the Courage Center in Golden Valley, a leading rehabilitation and resource center for people living with disabilities.

Sanford, president of the nonprofit yoga studio, Mind Body Solutions, is a paraplegic and a gifted yoga teacher. He founded Mind Body Solutions for the purpose of helping others to awaken the connection between mind and body. The studio offers corporate stress management programs, and brings the benefits of yoga to those living with disabilities.

Matt’s story started 25 years ago when his family’s car hit ice and went off a bridge. At 13, he was told he would never walk again and he was urged to accept his condition by doctors at Mayo Clinic. But Matt’s personal development as a re-

sult of the accident led him to accept a different path. “It took a devastating car accident, paralysis from the chest down, and dependence on a wheelchair before I truly realized the importance of my body.

After the accident, I spent the first twelve years believing that my mind was completely shut out of my paralyzed body.

Worse than that, I actually believed it didn’t matter. I spent the next thirteen years practicing yoga and discovering how deeply I was mistaken. Living vibrantly through one’s whole body—whether paralyzed or not—is a powerful part of living.”

I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, and if my hands hurt that day, buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out, I need to spend more time to look presentable, and then you need to factor in another five minutes for feeling badly that it took you two hours to do all this.

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ennepin County Library held an Assistive Technology Open House at Ridgedale Resource Library. Community partners include Assistive Technologies of Minnesota and Simon Technology Center of PACER (Parent Advocacy Coalition for Educational Rights) Center.

Demonstrations featured new technology and resources that improve access to the library for people with visual and hearing impairments as well as those with limited mobility.

An electronic print magnifier magnifies a printed page up to 45 to 60 times its original size and projects it onto a Recipients of the award receive large TV screen. Electronic print magnifiers are available $4,000 to advance their efforts. Product demonstrations inat the Augsburg Park, Golden Valley, Plymouth, Sanford plans to put the money cluded: Ridgedale, and Southdale libraries.

Matt says, “Deepening the toward a video/DVD on the mind-body connection im- intersection of yoga and dis- • MAGic Pro, a magnification Photo Credit: Hennepin County Library. and speech program for low proves the quality of our lives. ability, “Our work at Mind Body vision users. MAGic allows As a writer, philosopher, and Solutions is reaching a tipping the blind and allows users to vices as well as access to the the user to magnify the yoga teacher, I have dedicated point. I get requests from all access hyperlinks and con- library’s catalog, electronic screen from 2 to 16 times the my life to making this insight a over the world from disabled tent on a Web page. data bases, the Internet, and original size. MAGic also practical feature of our every- people and instructors alike. other resources, go to www. day living.” “talks” to the user, repeating Other assistive technology hclib.org.

We need a video/DVD to meet commands and helping to equipment demonstrated inthis rising demand and help as Established in 1992, the Judd many people as we can.” navigate the screen. cluded sound amplification More than 2 million books, Jacobson Memorial Award recsystems that can be used in magazines, newspapers, CDs, ognizes the pursuit or achieve- For more information about • Open Book, Optical Charac- group or individual settings, and other materials, plus more ter Recognition (OCR) soft- alternative computer mice such than 1,000 computer workstament of an entrepreneurial en- Mind Body Solutions, call 952ware that scans and reads as the trackball and joystick, tions, are available to you free deavor by a person with a 473-3700 or visit the Web site aloud mail, books, articles, or closed-captioned televisions, of charge at the libraries. Liphysical disability or sensory at www.mindbodysolutionsother printed forms. Head- and height-adjustable desks. brary cards are free. Apply at impairment. The award is mn.org. ■ phones are available; volume any of the 26 suburban may be adjusted.

For more information, contact Hennepin County libraries Meg Canada at 952-847-8587. (bring a form of identification) Cont. from p. 5 • JAWS (Job Access With or fill out your application I think she was starting to un- so that she could eat dinner Speech) for Windows, is a Lifelong Learning Via online at www.hclib.org. derstand when she theoreti- that night. screen reader (also called Hennepin County Library cally didn’t even get to work, Voice Output Technology). For information about upcom- Wireless Internet access is and she was left with six When we got to the end of her This software is designed for ing activities and current ser- available at all 26 libraries. ■ spoons. I then explained to her pretend day, she said she was that she needed to choose the hungry. I summarized that she rest of her day wisely, since had to eat dinner but she only when your “spoons” are gone, had one spoon left. If she some days were worse than and make a plan like I am this time with you.” they are gone. Sometimes you cooked, she wouldn’t have others; some days I have more strategizing a war. It is in that can borrow against tomorrow’s enough energy to clean the spoons than most. But I can lifestyle, the difference be- Ever since this night, I have “spoons,” but just think how pots. If she went out for dinner, never make it go away and I tween being sick and healthy. used the spoon theory to exhard tomorrow will be with less she might be too tired to drive can’t forget about it, I always It is the beautiful ability to not plain my life to many people. In “spoons.” I also needed to home safely. Then I also ex- have to think about it. I handed think and just do. I miss that fact, my family and friends reexplain that a person who is plained, that I didn’t even her a spoon I had been holding freedom. I miss never having fer to spoons all the time. It has sick always lives with the loom- bother to add into this game, in reserve. I said simply, “I to count “spoons.” been a code word for what I can ing thought that tomorrow may that she was so nauseous, that have learned to live life with an and cannot do. Once people be the day that a cold comes, or cooking was probably out of extra spoon in my pocket, in After we were emotional and understand the spoon theory an infection, or any number of the question anyway. So she reserve. You need to always be talked about this for a little they seem to understand me things that could be very dan- decided to make soup, it was prepared.” while longer, I sensed she was better, but I also think they live gerous. So you do not want to easy. I then said it is only 7pm, sad. Maybe she finally under- their life a little differently too. run low on “spoons,” because you have the rest of the night It’s hard, the hardest thing I stood. Maybe she realized that I think it isn’t just good for you never know when you but maybe end up with one ever had to learn is to slow she never could truly and hon- understanding lupus, but anytruly will need them. I didn’t spoon, so you can do some- down, and not do everything. estly say she understands. But one dealing with any disability want to depress her, but I thing fun, or clean your apart- I fight this to this day. I hate at least now she might not com- or illness. Hopefully, they don’t needed to be realistic, and un- ment, or do chores, but you feeling left out, having to plain so much when I can’t go take so much for granted or fortunately being prepared for can’t do it all. choose to stay home, or to not out for dinner some nights, or their life in general. I give a the worst is part of a real day for get things done that I want to. when I never seem to make it to piece of myself, in every sense me.

I rarely see her emotional, so I wanted her to feel that frustra- her house and she always has of the word when I do anywhen I saw her upset I knew tion. I wanted her to under- to drive to mine. I gave her a thing. It has become an inside We went through the rest of maybe I was getting through stand, that everything every- hug when we walked out of the joke. I have become famous for the day, and she slowly learned to her. I didn’t want my friend one else does comes so easy, diner. I had the one spoon in saying to people jokingly that that skipping lunch would cost to be upset, but at the same but for me it is one hundred my hand and I said “Don’t they should feel special when her a spoon, as well as stand- time I was happy to think fi- little jobs in one. I need to think worry. I see this as a blessing. I spend time with them, being on a train, or even typing at nally maybe someone under- about the weather, my tem- I have been forced to think cause they have one of my her computer too long. She stood me a little bit. She had perature that day, and the about everything I do. Do you “spoons.” ■ was forced to make choices tears in her eyes and asked whole day’s plans before I can know how many spoons people and think about things differ- quietly, “Christine, how do you attack any one given thing. waste everyday? I don’t have Reprinted with Permssion, © ently. Hypothetically, she had do it? Do you really do this When other people can simply room for wasted time, or wasted 2003 by Christine Miserandino to choose not to run errands, everyday?” I explained that do things, I have to attack it “spoons” and I chose to spend www.Butyoudontlooksick.com

SPOON THEORY and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hadn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon.

named for the late Judd Jacobson, a Minnesota business pioneer who became a quadriplegic Matt Sanford as a result of a diving accident.

The award is administered by Courage Center, with funds made possible by Daniel J. Gainey, a lifelong friend of Judd Jacobson.

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November 10, 2005

Accessible Performances The following performances will be Audio Described (AD) for people who are blind or have low vision, or Interpreted in American Sign Language (ASL) for people who are deaf or hard of hearing. Compiled by VSA arts of MN, 612-332-3888 or http://mn.vsarts.org.

Tosca by Puccini Nov. 5-13, 2005 In Italian with English captions by: MN Opera Co. at Ordway Center for Performing Arts, 345 Washington St., St. Paul; AD: Sun., Nov 13, 2pm; pre-opera discussion at 1pm; Tix: halfprice for AD patrons (discount code “R”); 612-333-6669; www.mnopera.org N*W*C Nov. 13, 2005 Performed by: SpeakTheater of LA at Stephen B. Humphrey Theater, Saint John’s University, Collegeville; ASL & AD: Sun., November 13, 2:00 pm; Tix: $14-18; subsidy available for companion; 320-363-5777; www.csbsju.edu/finearts Antigone Oct. 31 – Nov. 20, 2005 Performed by: Ten Thousand Things Theater at the Open Book, 1011 Washington Ave. S., Mpls.; AD: Sunday, November 13, 8:00 pm; Tix: $13 (reg. $20), 612-203-9502; www.tenthousandthings.org The Pink Dress Nov. 5-20, 2005 Performed by: In the Heart of the Beast Puppet & Mask Theatre, 1500 E. Lake St., Mpls.; AD: Tues., November 15, 10:30 am; Sun., November 20, 2:00 pm; Captioning: All performances supertitled; Tix: $10: 612-721-2535; info@hobt.org; www.hobt.org Flow Nov. 2-20, 2005 Performed by: Will Power at Children’s Theatre Co., Cargill Stage, 2400 3rd Ave. S., Mpls.; AD & ASL: Wednesday, November 16, 10:30 am; Fri., November 18, 8:00 pm; Tix: 612874-0400; www.childrens theatre.org Berenstein Bears Nov. 18, 2005 Performed by: Omaha Theater Co. at Stephen B. Humphrey Theater, Saint John’s University, Collegeville; ASL: Fri., November 18, 7:00 pm; Tix: $612; 320-363-5777; subsidy available for companion seating; www.csbsju.edu/finearts Follies Nov. 3-27, 2005 Performed by: Bloomington Civic Theatre at Bloomington Center for the Arts, 1800 W. Old Shakopee Rd.; ASL: Fri., November 18, 7:30 pm; AD: Sat., November 19, 2:00 pm; Tix: $17; 952-563-8575; www. bloomingtoncivictheatre.org Bye, Bye Birdie Nov. 4-19, 2005 Performed by: Morris Park Players at Folwell Middle School, 3611 20th Ave S., Mpls.; AD: Fri., November 18, 7:30 pm; Tix: $10 (reg. $12); 612-724-8373, www.morrisparkplayers.org

Arlecchino, Servant of Two Masters Nov. 9-20, 2005 Guthrie WORLDStage Series presented at Pantages Theatre, 710 Hennepin Ave. S., Mpls.; AD: Friday, November 18, 7:30 pm; Tix: $16; 612-377-2224, TTY 612-377-6626; www. guthrietheater.org A Midsummer Night’s Dream Nov. 11-20, 2005 Performed by: University of Minnesota Theatre at Rarig Center, 330 21st Ave. S., Mpls.; ASL: Sat., November 19, & Sat., Feb. 4, 8:00 pm; Tix: $8-14, 612624-2345 or utheatre@umn. edu; http://theatre.umn.edu

The Miracle Worker Dec. 2-18, 2005 Performed by: Torch Theater at Mpls. Theatre Garage, 711 W. Franklin; AD & ASL: TBA; Tix: $18; Reduced for AD/ASL patrons; 612-870-0723; www. torchtheater.com Live at the Funky Butt Jazz Club Nov. 17 – Dec. 17, 2005 Performed by: Interact Center for Visual & Performing Arts, 212 Third Ave. N., Mpls.; AD: Friday, December 2, 7:30 pm, and Saturday, December 3, 3:00 pm; ASL: Saturday, December 3, 3:00 and 7:30 pm; Tix: $12$15, 612-343-3390; ASL/AD patrons get $7 off at: 612-3395145 ext. 11; www.Interact Center.com or www.ticket works.com

The Best Christmas Pageant Ever Nov. 18 - Dec. 22, 2005 Performed by: Lyric Arts Main Street Stage, 420 E. Main St., Black Nativity: A CelebraAnoka; ASL: Fri., November tion of Family, A Celebration for the Soul…Testify!

25, 7:30 pm; Tix: $10-14, 763Nov. 25 - Dec. 18, 2005 422-1838; www.lyricarts.org Performed by: Penumbra Theatre Co. at Martin Luther King The Little Prince Nov. 25, 2005 – Jan. 1, 2006 Center, 270 N. Kent St., St. Paul; Performed by: Theatre de la ASL: Saturday, December 3, Jeune Lune, 105 N. First St., 8:00 pm; Tix: 651-224-3180 Mpls.; ASL: Sunday, Novem- (specify ASL); www.pen ber 27, 7:00 pm; AD: Sunday, umbratheatre.org December 11, 7:00 pmTix: $13 (reg. $20); TicketWorks 612The Nutcracker and 333-6200 or 612-332-3968 x100; The Mouse King www.jeunelune.org Nov. 5 – Dec. 23, 2005 Performed by: Commonweal A Christmas Carole Theatre, 206 Parkway Ave. N. Petersen in downtown Lanesboro; ASL: Nov. 26 – Dec. 31, 2005 Performed by: Tod Petersen & Sun., December 4, 2:00 pm; Tix: the Carolettes (Theater Latte $10, 800-657-7025; www.

Da) at Loring Playhouse, 1633 commonwealtheatre.org Hennepin Ave. S., Mpls.; AD Holiday Traditions & ASL: Thurs., December 1, in the Period Rooms 8:00 pm; Tix: $20; 612-209-6689 TicketWorks; www.latteda. Nov. 25, 2005 – Jan. 8, 2006 org or www.ticketworks.com Mpls. Institute of Art, 2400 Third Ave. S.; ASL: Sun., December 4, 2:00 pm; Thurs., DeWilly Wonka cember 8, 7:00 pm (Tours begin Dec. 2, 2005 Presented by: the Kennedy on the third floor in the Bell Center at Petters Auditorium, Decorative Arts Court); Sun., Benedicta Arts Center, College December 4, 3:30 pm at the of Saint Benedict, St. Joseph; Purcell-Cutts House; Tix: AdASL: Fri., December 2, 11:15 mission charged to museum; am, 7:00 pm; Tix: $6-12; sub- interpreted tour is free; 612sidy for companion seating; 870-3131 or TTY 612-870-3132, 320-363-5777; www.csbsju. www.artsmia.org edu/finearts Evening of One-Act Plays Dec. 1-10, 2005 Raymond Luczak Publication Release Reading Performed by: UMD Dept. of Theatre, Marshall Performing Dec. 2, 2005 At Loft Literary Center, 1011 Arts Center, University of MinWashington Avenue South, nesota Duluth, 1215 Ordean Mpls.; ASL: Friday, December Court, Duluth; ASL: Sunday, 2, 7:30 pm; Tix: Free, 612-215- December 4, 2:00 pm; Tix: $62575; www.loft.org; www.is 13; 218-726-8561; www.d.umn. books. com; www.raymond edu/theatre luczak.com A Christmas Carol Nov. 19 - Dec. 24 The Dance on Widow’s Row Performed by: Guthrie Theater, Nov. 11 – Dec. 11, 2005 Performed by: Mixed Blood 725 Vineland, Mpls.; ASL & Theatre, 1501 S. 4th St., Mpls.; AD: Sat., December 10, 1:00 AD & ASL & Captioning: Fri., pm; Tues., December 13, 7:30 December 2, 8:00 pm; Tix: $18; pm; Tix: $16; 612-377-2224, 612-338-6131; boxoffice@ TTY 612-377-6626; www. mixedblood.com; www. guthrietheater.org mixedblood.com

Charlie & the Chocolate Factory Dec. 2-18, 2005 Performed by: Fargo-Moorhead Community Theatre, 333 Fourth St. S., Fargo; AD: Saturday, December 10, 7:00 pm; ASL: upon request in advance; Tix: $7.50, less for seniors, students, ages 3-12; 701-235-6778, 877-687-7469; www.fmct.org SOULstice: Holiday Music That’s Good For Your Soul!

Dec. 9-11, 2005 Performed by: Twin Cities Gay Men’s Chorus at Ted Mann Concert Hall, U of M, 2128 Fourth St. S., Mpls.; ASL: Saturday, December 10, 8:00 pm; Tix: 612-624-2345; FMI: 612339-7664; www.tcgmc.org

Scottish Christmas featuring Bonnie Rideout Dec. 17, 2005 Performed at Petters Auditorium, Benedicta Arts Center, College of Saint Benedict, St. Joseph; ASL: Sat., December 17, 7:30 pm; Tix: $23-26; subsidy for companion; 320-3635777; www.csbsju.edu/finearts Cantus & St Paul Chamber Dec. 18, 2005 Performed at Stephen B. Humphrey Theater, Saint John’s University, Collegeville; ASL: Sun., December 18, 2:00 pm; Tix: $15-20; subsidy for companion; 320-363-5777; www.csbsju.edu/finearts

Arsenic and Old Lace Nov. 18 - Dec. 18, 2005 Performed by: Theatre in the The Best Christmas Round Players, 245 Cedar Ave., Pageant Ever Mpls.; AD: Sun., December 18, Dec. 2-23, 2005 Performed by: SteppingStone 2:00pm;Tix:$20;612-333-3010; Theatre at Landmark Center, www.theatreintheround.org 75 W. 5th St., St. Paul; ASL: Sunday, December 11, 2:00 pm; AD: Tuesday, December 13, 11:00am;Tix:$9;651-225-9265; www.steppingstonetheatre.org A Winnie-the-Pooh Christmas Tail Nov. 18 – Dec. 28, 2005 Performed by: Stages Theatre Co. at Hopkins Center for the Arts Mainstage, 1111 Mainstreet; ASL: Sunday, December 11, 2:00 pm, and Wednesday, December 14, 12:30 pm; Tix: $14, $11 children & seniors; 952-979-1111; www.stagestheatre.org Disney’s Aladdin Jr. Nov. 15, 2005 – Jan. 6, 2006 Performed by: Children’s Theatre Co., 2400 3rd Ave. S., Mpls.; AD & ASL: Wednesday, December 14, 10:30 am; Fri., December 16, 7:30 pm; Tix: 612-874-0400; www.childrens theatre.org La Befana Nov. 25 – Dec. 31, 2005 Performed by: In the Heart of the Beast Puppet & Mask Theatre, 1500 E. Lake St., Mpls.; AD: Thurs., December 15, 10:30 am; Sun., December 18, 2:00 pm; ASL: Thurs., December 15, 10:30 am & 7:30 pm; Tix: 612-721-2535, or info@hobt. org; www.hobt. org Joe & Fibber Find Christmas Dec. 8-18, 2005 Performed by: Bloomington Art Center Gallery Theater at Bloomington Center for the Arts Black Box Theater, 1800 W. Old Shakopee Rd.; ASL: Fri., December 16, 7:30 pm; Tix: $8; 952-563-8587; www.bloom ingtonartcenter.com

Seussical Dec. 2-18, 2005 Performed by: Youth Performance Co. at Howard Conn Fine Arts Center, 1900 Nicollet Ave., Mpls.; AD & ASL: Sunday, December 18, 2:00 pm; Tix: half-price; reg. $12, students or seniors $10; call in advance to confirm the service; 612-623-9080; www. youthperformanceco.com Same Time, Next Year Nov. 4 – Dec. 31, 2005 Performed by: Jungle Theater, 2951 Lyndale Ave. S., Mpls.; AD: Thurs., December 29, 7:30 pm; Tix: $8, 612-822-7063; www.jungletheater.com Villa America: American Moderns, 1900-1950 Dec. 4, 2005 – Feb. 26, 2006 ASL-interpreted public tour of exhibit begins at the round bench in the museum lobby; Sun., January 1, 2:00 pm; Tix: Admission charged to museum; 612-870-3131orTTY612870-3132, www.artsmia.org ■

Live At The Funky Butt Jazz Club

T

his large multi-cultural musical theatrical event uses the story of jazz as a springboard to tell tales of the “outsiders” who created music that epitomized the improvisational nature of the American experience. Highlighting the talents of six of our most talented African American actors and guest actor/ jazz singer, Xavier Rice, along with a jazz band and a cast of over 30, this show is Interact at its most inventive. The “Funky Butt Hall” was, in fact, a real place that existed in 1906 in Storyville, New Orleans at the very infancy of the music that was to define an age as well as change music and art around the world.

who were never heard are given a voice, people that were invisible create work of extraordinary beauty. For those that see and hear the art and stories of our artists, feelings for the human experience are forever changed.”

Showtimes: Wed, Thurs, Fri & Sat Evenings at 7:30 pm, Wednesday Matinees at Noon, Saturday Matinees at 3 pm, Pay what you can nite!

Wed, December 7th at 7:30 pm, ASL Interpretation Dec 3rd Matinee and Eve, Audio Description Dec 2nd Eve and Dec 3rd Matinee, This show runs November 17 thru December 17, 2005, Reserve your tickets by calling TicketWorks at 612343-3390 or visit www.Ticket The story of Jazz resonates works.com with Interact’s artists, because most of the early jazz perform- All performances are at Interers were marginalized individu- act Center for the Visual & als who found their voice Performing Arts, 212 Third through the power of their art, Ave. N., Suite 140, Mpls 55401, and in the process, changed ENTRANCE on 2nd Street. For the musical landscape. For more information, call 612-339this reason we believe this 5145 or visit Interact’s Web project will further our artistic site at www.interactcenter. vision: “At Interact, people com. ■

Eric Peterson 1959 – 2005

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ric Peterson, 46, a disability rights advocate from Minneapolis, died October 3 of complications from diabetes. Eric was involved on boards with the Minneapolis Advisory Committee on People with Disabilities, VSA arts of Minnesota, Minnesota Association of Community Theatres, and his Linden Hills Neighborhood Association. He received the 2002 Jaehny Award for his efforts toward making the arts accessible for people with disabilities. He is survived by his mother Peggy and two brothers, Raymond and Steven. ■

November 10, 2005

17

Upcoming Events November 14, 2005 Skills for Effective Communication: Techniques for Parents of Children with Disabilities to Work Effectively with Schools At this new workshop, participants will learn how to: Prepare for meetings; Gather information; Resolve disagreements; Ask questions; Become an equal partner.

November 16, 2005 Postsecondary Education Experience: The Student Perspective This workshop will help youth with disabilities (ages 14 and older) and their families make decisions about post-secondary training and education options. A panel of young adults will share their experiences with post-secondary training, education, and employment. They Day/Time: Monday from 7 pm will discuss: Adult service proto 9 pm. viders; College accommodations; Personal support netCost: free, but advance regis- works; Rehabilitation training tration is requested. sources; Supplemental Security Income, PASS plan, and Location: PACER Center, 8161 work incentives.

Normandale Blvd., Bloomington, MN. Day/Time: Wednesday from 7 pm to 9 pm; Contact Information: To register, call PACER at 952-838- Cost: free, but advance regis9000 or 952-838-0190 (TTY). In tration is requested.

Greater Minnesota, call 800537-2237 (toll free) or visit the Location: PACER Center, 8161 PACER Web site at www. Normandale Blvd., Bloomingpacer.org ton, MN. Contact Information: To register for the workshop, call PACER at 952-838-9000 or 952838-0190 (TTY). In Greater Minnesota, call 800-537-2237 (toll free) or visit the PACER Web site at www.pacer.org

November 30, 2005 Housing: Where Will Our Children Live When They GrowUp? If you’ve ever asked this question, this workshop is for you.

Come and learn about housing options and services for children and young adults with disabilities. Take advantage of small group activities and netDay/Time: Blast! Kids Carni- working opportunities with val starts at 7:30 am, Wheelers others who have wondered and Baby Joggers start at 8:25 about future options. am, Run or Walk starts at 8:30 am, Blast! Indoor Fun Run Day/Time: Wednesday, 7:00 pm to 9:30 pm. starts at 9:00 am.

November 17, 2005 Easier Access to Digital Learning Materials This workshop is for parents of children with disabilities.

Participants will: learn about current trends and resources for accessible instructional materials; see technology demonstrations; receive a resource list of accessible materials.

November 19, 2005 Mental Health Association of Minnesota’s 66th Anniversary Celebration: New York, New York Emceed by Julie Nelson of KARE-11 TV, the evening will include New York entertainment, dinner, silent and live auctions, and music by The Christine Rosholt Quartet.

Honorary chairs include SenaDay/Time: Thursday 6 pm to 9 tor David Durenberger, Vice President Walter Mondale, pm.

Julie Nelson, KARE-11 TV and Cost: free, but advance regis- Charles Schulz, MD, University of Minnesota. tration is requested.

November 24, 2005 16th Annual Arena 5K – Thanksgiving Day Run This is a chance for families of all ages and abilities to join together in rolling, running, or walking their way to the Downtown Minneapolis finish line, before enjoying their Thanksgiving Day meal.

Location: Lakeview Evangeli- Day/Time: Saturday, 6:00pm. cal Free Church, 6285 Fairview Rd., Baxter, MN. Cost: $90 per person; VIP tickets for $140.

Contact Information: To register for the workshop, call Location: Hotel Sofitel at 5601 PACER at 952-838-9000 or 952- W. 78th St, Bloomington, MN. 838-0190 (TTY). In Greater Minnesota, call 800-537-2237 Contact: The Mental Health (toll free) or visit www.pacer. Association of Minnesota at 612-331-6840. org.

Cost: Thru Nov. 23, 2005 $15.00 for members of Northwest Athletic Club and $18 for non-members. Race Day - $20 members/$23 non-members.

Cost: FREE, Sign up now.

Location: PACER Center, Inc., 8161 Normandale Boulevard, Minneapolis, MN 55437-1044;

Location: Target Center, 600 Contact Information: 952-8389000, 952-838-0190, 800-53 First Ave N, Minneapolis.

PACER (800-537-2237) tollSponsors: Northwest Athletic free. ■ Club, Northwest ClubRun, Second Harvest Heartland, Star Tribune, KS95, Chrysler, Dasani, Target Center, Chiropractic Health & Wellness, and Wholesale Imprints.

Contact Information: Northwest Athletic Club Arena 5K Info Line 952-593-8178 or www.arena 5k.com.

Minnesota’s connection to disability-related information and assistance

Housing Personal care assistance Transportation Employment Disability benefits Assistive technology And much more…

18

November 10, 2005

News At A Glance . . .

MCIL Workshops

HUGO Folding Cane System: Ready, Set…..Walk!

Continuing Workshops The following workshops will to be from 10:30am-11:30am: Every First and Third Thursday Nov. 17th (Laura, Career Portfolio) Dec. 1st (Andy, Individual Advocacy) Dec. 15th (Jim, Ramp/Home Modification)

The new HUGO Folding Cane System is the most versatile, functional and ergonomically correct cane in the world. Designed by the Georgia Tech Research Institute, a leader in the ergonomics of the elderly, the HUGO Folding Cane automatiEvery Second and Fourth Thursday cally unfolds and securely locks into position. The HUGO Cane Nov. 10th (American Sign Language) is so strong, it can support up to 550 pounds—most canes Nov. 24th (MCIL CLOSED.) support only half that weight. The patented Shock Absorbing Dec. 8th (American Sign Language) Tip is flared with an ultra grip edge for extra stability and traction Dec. 22nd (American Sign Language) providing confidence on all kinds of terrain, in all kinds of weather. A safety strap at the handle provides extra confidence.

Please RSVP one week prior to each workshop. For more details The wide print recessed bottom of the tip distributes weight and/or to RSVP contact: Laura Borton at 651-603-2028, e-mail evenly and is reinforced with an aluminum insert for added laurab@mcil-mn.org strength.

New ‘Guide To Biotechnology Finance’ Is Now Available

Additional information about the HUGO Folding Cane can be obtained toll free (866) 321-HUGO (1-866-321-4846) or via www.HUGOanywhere.com.

Culture and Community Events Come learn and experience new things! Please RSVP to Laura at 651-603-2028 laurab@mcil-mn.org. Upcoming events in October, November, and December include topics such as: Inclusive Integration for Education in Africa, Deaf Education, and Disability Sports. Guest speakers will be Ingrid Hoffman on Deaf Education/Trends in Europe, Friday, Nov 11, 2005 from 1 pm to 3 pm and Pat McNamara on Disability Sports, Dec 9, 2005 from 1 pm to 3 pm MCIL Support Groups • TBI Support Groups are every other Thursday from 6:00pm7:00pm at MCIL. • Chemical Dependency with Disability Support Group is held every Wednesday from 6:30pm-8:00pm also at MCIL. Call the MCIL front office for more information 651-646-8342.

• GLBT Support Group for people with chronic illness and disabilities meets every third Tuesday of the month at the Rice Street Library from 6-7:30pm. The gay, lesbian, bisexual, transgender support group is presented by the National Multiple Sclerosis Society and the Metropolitan Center for Independent Living. Come and meet other people who are experiencing similar success and barriers. Share stories and resources in a safe and comfortable environment. For more information call: Connie at 612-290-5678 or Jeff Fisher at 612335-7951. jfisher @mssociety.com

A new publication, titled A Guide to Biotechnology Finance, is Got A Lot Of Stuff? now available through a collaborative effort of the Department of Employment and Economic Development (DEED) and the Twin Cities law firm of Lindquist & Vennum P.L.L.P. Is your closet full of coats you don’t wear? Is your basement stuffed silly with dishes you don’t use? Still holding on to the “Biotechnology” is the science of developing and manufactur- couch from your college dorm room, twenty years later? LookNew Feature Film To Be Funded By ing new products derived from living organisms or from parts ing for a way to get rid of it?

Private Donations Via The Internet of living organisms, like cells, genes or proteins. Some of these products save lives and others improve the quality of life. Look to Refugee Services. We accept your good-condition Also Raises Awareness About Down Syndrome However, research and development can be a costly invest- furniture, winter coats, bedding and most kitchen items (think ment, so companies are eager to attract grants, corporate dishes, cups, pots and pans; don’t think waffle iron, lefse maker, Newly formed production company Rapid Eye Productions is partners and other financing options. bread pans). Pick-up is available. taking innovative new steps into the future of film financing; it was announced by Rapid Eye Productions principal Katrina “This new guide is an essential reference for understanding the We are especially in need of: Daily. The revolutionary plan will allow people worldwide to complexities of financing a business in this evolving field,” said • Good condition, medium and large sized pots and pans, with contribute any denomination of monies from one dollar to one DEED Commissioner Matt Kramer. “Minnesota is on the cutting matching lids million dollars to help support the production of One Day, the edge of biotechnology, thanks to the expertise of a number of • Good condition coats, all sizes, especially men’s coats company’s first feature film. scientists, entrepreneurs and legal experts. This guide will help • Good condition winter accessories, such as gloves, mittens, us build on our success.” hats, boots, and scarves.

Rapid Eye Productions has set a goal to raise approximately $2.5 • New bath towels and new washcloths million dollars over the next 18 months. They plan to do this by The guide is written in concise language, but it doesn’t gloss • New containers of dish soap, and all-purpose cleaning sup- not only targeting people who want to support what has over the details that make it invaluable to the biotechnology plies (Lysol, Pinesol, etc.) otherwise become a somewhat faded concept of independent entrepreneur. The heart of the guide is a section on financing • Pillows, sheets, blankets and comforters filmmaking, but by also reaching out to the more than seven options available to biotechnology companies, including the million people worldwide affected by Down Syndrome, one of requirements and restrictions that apply to each option. Deter- We also accept: the film’s pivotal storylines. mining the most appropriate financing sources and methods • Furniture often depends on the company’s stage of development, so the • Dishes and eating utensils One Day is an edgy comedy about a young man, challenged with guide also includes an invaluable discussion of those stages. • New laundry baskets Down Syndrome, who is unusually determined to find the • New packages of toilet paper, paper towels and facial tissue perfect husband for his mother. The story, which does not focus While the guide provides a thorough explanation of the most • New toothbrushes, toothpaste, soap, shampoo and nail on the disabilities of this main character but on his living his clippers important aspects of biotechnology finance, it does not constinormal life, follows the chaos that ensues when he brings his tute legal advice. Businesses should always consult with legal latest victim, an arrogant businessman with a Mercedes and a counsel for specific advice on financing, taxes and other issues. Thank you for continued support of Refugee Services. host of prejudices, home to meet his unsuspecting mother.

For more information contact Sarah Greving, Volunteer and Outreach Coordinator, VISTA Member, Minnesota Council of MN Depart. of Employment & Economic Development, 332 Churches Refugee Services, 122 Franklin Avenue West, Suite Minnesota St, #E200, St. Paul, MN 55101-1351, 800-657-3858 100, Minneapolis, MN 55404, grevings@mnchurches.org 612.230.3219 To request a copy of the guide, please call (651) 282-2103.

Further information can be found online at www.rapid eyeproductions.com/oneday where potential donors can share their opinions in a research survey, review the company’s plan, and read the first ten pages of the script.

At A Glance - cont. on p. 20

BDC Management Co. is now accepting applications for our waiting lists at the following affordable communities

Albright Townhomes Buffalo Court Apartments Elliot Park Apartments Evergreen Apartments Hanover Townhomes Lincoln Place Apartments Olson Towne Homes Prairie Meadows Raspberry Ridge Talmage Green Trinity Apartments Unity Place Vadnais Highlands Woodland Court Apartments

Minneapolis Buffalo Minneapolis Hutchinson St. Paul Mahtomedi Minneapolis Eden Prairie Hopkins Minneapolis Minneapolis Brooklyn Center Vadnais Heights Park Rapids

(612) 824-6665 (763) 684-1907 (612) 338-3106 1-800-661-2501 (651) 292-8497 (651) 653-0640 (612) 377-9015 (952) 941-5544 (952) 933-3260 (612) 623-0247 (612) 721-2252 (763) 560-7563 (651) 653-0640 1-888-332-9312

1 BR 2 BR 2 BR 1 BR 1 BR 2 BR 1 BR 2 & 3 BR 2 BR 2 BR 1 BR (sr) 2 BR 3 BR 1 BR

(Please call each individual site for specific building information.

All listings are accessible.)

November 10, 2005

INTERVIEWING Judy Lysne Given Humanitarian Award For Visionary Work

Cont. from p. 10

However, at some point the disability should be addressed in the context of how the applicant can handle the job. Ideally, the issue will be raised first by the applicant, says Klare.

J

udy Lysne remembers her frustration growing up in North Dakota where her friend Richie did not attend the two-room school house with her because he had Down syndrome. Common thinking at the time was that people with disabilities could not learn. She knew this was shortsighted and just plain incorrect.

In l973, Lysne took her belief in the abilities of those who are disabled to the non-profit organization Lifeworks Services and she has been blazing trails ever since in Minnesota and internationally. Building on Lifeworks’ passion for innovation, she has initiated supported employment, giving a community presence to people with disabilities.

She started as a teacher in Lifeworks’ preschool program.

Then she moved into administrative positions where she could build the capacity of the non-profit to fulfill its mission.

Founded in l965, Lifeworks started as the Development Learning Center (DLC) serving families of children with special needs. Rejecting the traditional way of caring for people with mental retardation, they wanted to educate their children and give them a place in the community.

children and adults to control their own budgets for services.

Those families began to hire family members, neighbors, or friends to support them.

Lifeworks’ Customized Support Services team guides the support manager (the individual, family or guardian) through the process of hiring, training and supervising staff, and manages the formal employment relationship. This brings more continuity in the care and improves quality.

Lysne is entrepreneurial. When the economy softens and jobs are more difficult to find, Lifeworks increases opportunities for those it serves with re-training, life enrichment programs, art and music proHer visionary leadergrams, and volunship of Lifeworks Serteerism. A painting vices, a non-profit created by one Judy Lysne,Steve Wexler, supporting people Lifeworks artist was Lifeworks Board Chair, and George with developmental recently selected to disabilities in jobs, volunteerbe in a juried art show. The ing, art/music, and education, Lifeworks established Minne- walls at the Lifeworks centers was recognized as she was sota’s first home visiting pro- are covered with art created by given the first annual Brian C. gram for infants just before those they serve.

Barenscheer Award for hu- Lysne joined the organization. manitarian service by the Families who were struggling For years, Judy Lysne and her American Bank Foundation on with the birth of a child with husband, who also works with October 7. special needs gained support disabled people, have hosted and information quickly at officials from Denmark who “Judy Lysne exemplifies all that home. have come to observe and learn Brian believed,” said John from the success of the supSeidel, president/CEO and In 1988, the public schools in ported employment program. trustee of the American Bank Minnesota became respon- Denmark has always provided Foundation. “Judy’s enthusi- sible for direct service to chil- excellent support for people asm, dedication and convic- dren and Lifeworks, then known with disabilities and their famition have been instrumental in as Dakota, Inc., began to di- lies but until seeing Lifeworks the enormous contribution rectly serve only adults. was never convinced that supLifeworks has made in its 40ported employment could year history, enriching the lives Never a sheltered workshop, work. of people with disabilities and Lifeworks learned how to place the lives of those they touch.” people with developmental dis- “I can understand the skeptiabilities in jobs in community cism both here and abroad,” “Judy brought the bank and its businesses and then train and said Lifeworks Board Chair employees to a new percep- support them on the job. In Steve Wexler. “When I was at tion of disabled adults by en- 1985 when the first five people Norstan, one of my staff sugcouraging us to hire them to were employed, they earned gested bringing Lifeworks in. I work in our bank. They are $840. By 2004, through Life- was a big skeptic but after seephenomenal, inspirational em- works, 593 earned $3.74 million ing the capabilities of people ployees and they have working in more than 200 Min- with disabilities and watching changed us and our culture.” nesota businesses. how well they integrate into an organization, I became totally “Unemployment of disabled In l996, Lifeworks began pro- supportive. The Lifeworks clipeople is four times the na- viding school-to-work transi- ents become an inspiration to tional rate,” said Seidel. “This tion services to students in the employees and actually should be a big concern not special education. Students made us more efficient as well only of business but of the explore career options and get as improved our company’s entire community.” real work experience in a vari- morale. It is my goal to conety of industries while still in vince more businesses to be Judy Lysne joined Lifeworks school so they are ready for a involved in supported employin l973. After serving as co- job, or already hired, at gradu- ment.” president with Jim McCaul, she ation. assumed the president’s job in Contact: Mary Hassing, Mar2000. In her 32 years with Lysne was a leader in lobbying keting and Communications Lifeworks, she has focused on for a change in the way coun- Coordinator, 651-365-3725, the abilities of people with dis- ties supported families of chil- maryhassing@lifeworks.org abilities. She knew the answer dren and adults with disabili- or Ginger Sisco, Sisco Public was not sheltered workshops ties. In 2001, the legislature Relations, Inc., 763-544-0629, but real jobs in the community. made it possible for families of ginger.sisco@tela.com ■

better?” is a straightforward, nonthreatening question.

“How did you become disabled?” while equally direct, is an unwise question to ask, because the Americans with Disabilities Act (ADA) prohibits inquiring about the The candidate might say, “Be- cause of a disability. cause of my cerebral palsy I need a joystick mouse,” or, “In “A lot of people think the ADA case you’re wondering about is a confining law,” says my hearing impairment, I use Jonathan Kaufman, president TDD and TTY devices.” If the of DisabilityWorks Inc. and interviewer does not know The Monster Disability Adviwhat TDD and TTY devices sor. “But I think it’s very incluare, he’s not alone. (They’re sive. People with disabilities telecommunications aids.) come from every racial, ethnic That gives the interviewee a and religious group. In fact, chance to explain how the de- we’re the only minority group vices work, allaying the anyone can join at any time.” employer’s concerns about the Kaufman, who has cerebral disability while simultaneously palsy, notes that as the Ameridemonstrating his own com- can workforce ages, increaspetence, forthrightness and ing numbers of workers will motivation. face some sort of disability.

It’s the interviewer’s responsibility to raise the issue if the applicant does not. “What can we do to help you do this job

19

“We live in a litigious society,” he adds. “The ADA has created a lot of worries about lawsuits. If you’re an HR person

who doesn’t know everything about the law, admit it. Ask the person you’re interviewing to give their own story and perspective on their lives — their disability and their abilities.

Listen, react and be honest.

You can even say, ‘Forgive me if I say anything wrong. Feel free to correct me.’” That enables the interviewer to see the applicant as a whole person— the goal of any good interviewer.

Which is exactly what Joe HR Guy will be, as soon as he gets those boxes out of his office.

Copyright 2004 - Monster Worldwide, Inc. All Rights Reserved. You may not copy, reproduce or distribute this article without the prior written permission of Monster Worldwide. This article first appeared on Monster, the leading online global network for careers. To see other careerrelated articles visit http:// content.monster. com. ■

DSPAM - Cont. from p. 10 and DSPAM is that service participants and direct support professionals are partners in the move towards a self-determined life and in complimenting and facilitating growth of natural supports. They recognize that people needing support are more likely to fulfill their life dreams if they have welltrained, experienced, and motivated people at their side in long-term, stable, compatible support relationships. They also point out that well-planned workforce development strategies are needed to strengthen our workforce. That is just what they intend to do: promote the development of a highly competent and professional human services workforce which supports individuals in achieving their life goals.

commitment of direct service professionals to provide quality services, and make it very difficult for those in the human services industry to recruit and train qualified and committed individuals in direct support roles.

Some particular initiatives include enhancing the social status of Direct Support Professionals; providing access to high quality educational experiences and lifelong learning; strengthening relationships and partnerships between Direct Support Professionals, self-advocates, and other consumer groups and families; supporting the development of a credentialing program; as well as promoting systems reform that will provide incentives for educational experiences, increased compensaThe national organization and tion, and access to career oplocal chapters have developed portunities. national and statewide agendas to address various indus- Since their inception, members try issues. Many of these is- have created a Direct Support sues, some of which have been Professionals Code of Ethics; chronicled for 25 years, con- developed Community Supcern conditions harmful to ser- port Skill Standards for direct vice participants. Furthermore, support professionals and these issues undermine the frontline supervisors; and

compiled Apprenticeship Guidelines for Direct Support Professionals, which has been incorporated by the Department of Labor. In addition, they have published Frontline Initiative, the official newsletter of NADSP, which contains articles and stories of interest to people concerned with the quality of support provided to individuals experiencing effects of disabilities or aging.

The newsletter is especially geared toward sharing ideas and successes about what it takes to be a DSP in today’s community-focused human service environment.

For more information about direct service professionals, the National Alliance for Direct Support Professionals, the Direct Support Professional Association of Minnesota, their products and services, including membership opportunities for professionals, supervisors, and others (self-advocates, families, friends, or other professionals), please contact Mark Olson with Arc Hennepin/Carver by calling 952-920-0855 or e-mailing olson mark@archennepin.org. ■

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20

November 10, 2005

Twins’ Fan Re-discovers Passion For Baseball

ART -

By Sue Warner

Cont. from p. 13

T

his summer I re-discovered my passion for baseball in general and the Minnesota Twins in particular. Although it was a disappointment that the hometown team did not make it to the playoffs for the fourth straight year, the season was a dream come true for this diehard Twins fan.

ager Ron Gardenhire and pitcher Kyle Lohse, and to be one of the volunteers who went onto the field the last game of the season, as we announced the winner of the car.

Through my volunteer efforts, I discovered a new talent, shilling or as they say “carnival barking.” Call it what you will, who would have thought I’d My employer, Courage Cen- discover I’m good at shoutter, and our vehicle donation ing and drawing a crowd? But program, Cars for Courage, I am . . . partnered with the Minnesota Twins, Dodge, FSN North and My father taught me to love WCCO radio to raffle the Ulti- baseball at an early age. I grew mate Twins Fan Vehicle. The up listening to Halsey Hall and car in question was a new Herb Carneal on my dad’s tranDodge Charger RT with hemi sistor radio. I was one of those (whatever the heck that means) insane people who went to both autographed by Twins play- Twins World Series parades: ers, past and present. Heck, Parade highlight 1987: Joe even the TC Bear and Wally Niekro blindly hurling confetti the Beerman signed the darned out of his convertible during a car. lull in the parade, burying me almost to chin level. Parade As a communications manager highlight 1991: Almost being and general public relations trampled to death by the crowd maven, I’ve been involved in outside City Center. My first many such promotions and celebrity crush at age 16 was events through the years. But, Twins catcher Butch Wynegar. as a lifelong Twins fan, this (Calvin Griffith wasn’t the only promotion was a dream. The one who ‘really liked that kid!’). highlight of my summer was I re-lived that kind of crush meeting my childhood idol briefly this year, doting on Harmon Killebrew, Twins man- current Twins player Michael

Cuddyer. So, what if these days, players are two decades younger than me? A girl can still dream!

Sandoval, a broker with ING ceremonies. But, the best part Financial was in town in Au- of the day for me wasn’t being gust for a conference and at- on the field. It was being in the tended his first Twins game stands watching Johan where he purchased a raffle Santana pitch like only he can, The raffle was an amazing feat ticket.

Joe Nathan come in for the of volunteerism in action. We save, and the Twins sweeping sold tickets at every home game On the last day of the season, the Tigers in the last series of beginning July 1, until the end almost 50 volunteers, includ- the year. ■ of the season, Sept. 30. That’s ing me, gathered on the field, 40 home games. We needed a as the UTFV made its last ap- Sue Warner is the Communivolunteer to drive the car to the pearance and Jan Malcolm, cations Manager at Courage Dome and back, plus seven Courage’s CEO announced Center. other two hour shifts selling the winner during pre-game raffle tickets. Cars for Courage staff and volunteers also made special appearances with the car at local Dodge dealers, corporations and Twins Pro Shops. By season’s end, 140 Cont. from p. 18 individuals volunteered 1,655 hours. The UTFV (whose acUniversity Of Minnesota ronym sounds a bit like a ScanMonograph Available dinavian curse) was parked in front of the Metrodome’s Gate he University of Minnesota’s conference series on F or on the Plaza in 100 plus disability, held during the 2004-2005 academic year degree heat index, in rain (okay, is now available. The monograph includes summary I personally avoided the rain) and, by season’s end, cold and highlights from the conferences; research questions and unresolved policy issues stimulated by the conference deearly darkness. liberations; and suggestions for future University, disability On Friday, Sept. 30 the fun advocacy community, and joint University-advocacy comended. We sold more than munity activities.

10,000 raffle tickets, raising more than $53,000. Mike Readers may view and download the monograph at the Sandoval, from Sante Fe, New Center on Aging’s Web site, www.hsr.umn.edu/coa or at the Mexico, had his name drawn Access Press Web site at www.accesspress.org ■ from the overstuffed tumbler.

AT A GLANCE -

T

actually got the news, it was such a thrill! Taking my art more seriously is changing my life—it gives me a purpose and has boosted my self-esteem immensely. I can’t tell you how wonderful it feels.”

Artability is a communityfunded event underwritten by generous grants from The Boss Foundation and the Metropolitan Regional Arts Council. This year there’s an addition—an endowment fund set up by Bart and Lynn Galle in honor of their son Alex Galle. Alex, who suffered from depression, anxiety, and obsessive-compulsive disorder, died accidentally at the age of 20 while in a treatment center for drug abuse and mental illness. “Some of Alex’s happiest times were painting.

Some of his more private paintings were expressions of pain, but many of his watercolors expressed joy and humor. He loved painting them, but he loved giving them to other people even more.”

For more information contact Barbara Nichols, Resource Development Director, at 651288-3504 or Barbara.Nichols @PeopleIncorporated.org. ■

November 10, 2005

21

A Need For Environmentally Safe And Healthy Housing

by Mary Tellers “Because of my sensitivity to chemicals and electromagnetic radiation, at one point in my life, I had to move ten times in seven years.” Seminar Participant, October 2005, Environmentally Safe Housing Group, Third Way Network.

When No Place is Safe to Live Moving to a new residence ranks as one of the top causes of stress in a person’s life.

Imagine dealing with a severe illness that both debilitates your ability to work and also forces you to move because your housing is making you sick. Now, imagine having to do that ten times in seven years!!! Does this sound like a hopeless situation? For the chemically and electromagnetically challenged population, this scenario can occur frequently.

Lack of affordable housing is a growing problem in Minnesota and across the U.S. Affordable environmentally safe housing is virtually non-existent for the 16% of the population that

is environmentally sensitive.

Environmentally Safe and It is an invisible issue to the Healthy Housing majority of the population befor Everyone cause this injured segment of our society has no one to cham- As a member of TWNetwork, pion their cause. the Environmentally Safe Housing Group represents a In September 2005, a group of grassroots initiative to make twelve individuals, some of its vision of creating housing them chemically and electro- for the chemically and electromagnetically sensitive, came magnetically sensitive poputogether under the leadership lation a reality. We will start by of Third Way Network to ad- identifying two demonstration dress this need. The Environ- housing projects by the end of mentally Safe Housing Group 2005 that will involve remodelmet for ten weeks to explore the ing and electrical mitigation. possibility of creating affordable environmentally safe We are committed to engaging housing. other groups and individuals in the Twin Cities to identify TWNetwork is a non-profit and create housing that is safe organization whose mission is and attainable for people with to engage individuals and or- electromagnetic, chemical or ganizations to create afford- other environmental sensitiviable housing, be good neigh- ties. Are you interested in bors, and promote safe, healthy creating environmentally neighborhoods. TWNetwork safe housing? We are looking offers a holistic affordable for a volunteer base of people housing solution in partner- with electromagnetic and ship with local groups, strate- chemical sensitivities as well gic partners, property owners, as those who are committed to and financial sponsors. a proactive approach for creating “environmentally safe” housing for themselves and to

benefit everyone. This includes: renters, homeowners, formerly homeless, developers, building contractors, landlords, property managers, realtors, bankers, neighborhood leaders, architects, construction workers, and other interested individuals.

An Invitation to Participate We are excited to begin our new venture to create hope, healthy environments and a future for those who have no voice. The Environmentally Safe Housing Group invites you to share our dream by making a four-month commit-

ment and offering your time, commitment, and/or monetary contribution. If you would like to participate at any level and/ or are looking for more information about the group’s vision, please contact Diana Valentine at Third Way Network at 612-332-1311 x24 or by email at ValentineDiana@ ThirdWayNetwork.org. ■

Correction To October News At A Glance ollowing is a correction to the "Low Inter est Loans Available for Assistive Technology and Employment" article that was in News At A Glance last month.

F

viduals with Disabilities Act of 1998, Title III and in cooperation with A System of Technology to Achieve Results (STAR), a program of the State of Minnesota Department of Administration.

ATMn’s Micro Loan Program is funded in part through a grant from the US Department of Education (75%), under the Assistive Technology Act of 1998; P.L.100-407 Technology Related Assistance to Indi-

ATMN’s Access to Telework Program is funded in part (90%) through a grant from the US Rehabilitation Services Administration under the Rehabilitation Act of 1975 as amended P.L.105-659 and in

VISIT US AT

cooperation with A System of Technology to Achieve Results (STAR), a program of the State of Minnesota Department of Administration.

For more information contact Lynn Annis, ATMn, at 763479-8239. Assistive Technology of Minnesota is a non-profit organization providing access to assistive equipment and services for all ages and disabilities. ■

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At Medtronic, we provide lifelong solutions to people with chronic disease, impacting a life every 6 seconds.

As one of Fortune magazine’s “Best 100 Companies to Work For in America,” Medtronic is committed to the total well-being of our employees.

We are looking for top talent at all levels in: • Engineering – Electrical, Software, Firmware, IC Design, Product, Test, Quality, Mechanical, Manufacturing, Biomedical, Biomaterials; Six Sigma certifications a plus • Information Technology – Managers, Business Systems Project Leaders, Analyst, Programmer/Analyst • Clinical Studies/Regulatory Affairs • Finance • Sales/Marketing Review openings at www.medtronic.com/employment and select “Apply to this Job” or “Add to Cart” to route your resume directly to the hiring department.

With people like you, who have purpose, potential and passion, we’ll supply physicians and their patients around the world with the means to extend life, restore health and alleviate pain.

Join Medtronic today...and experience a passion for life.

Medtronic is an equal opportunity/affirmative action employer.

22

November 10, 2005

Access To Employment

Easy Access Adventures Life is a Journey . . .Take it!

Karen Kolodziejczyk Travel Agent 2776 Helen St. N. N. St. Paul, MN 55109 651.770.1956 info@easyaccessadventures.com www.easyaccessadventures.com

Employment ads are $16-$17 per col. inch. Nov 30 is the deadline for the Dec 10 issue. Mail to: ACCESS PRESS, 1821 University Ave. #104S, St. Paul, MN 55104 FAX 651-644-2136 • E-mail: access@accesspress.org

Classifieds

Reach 11,000 Active, Interested Readers with Access Press Classifieds. $10 up to 12 words, 45¢/word thereafter. Must be prepaid. Mail with check to: ACCESS PRESS, 1821 University Ave W, #104S, St. Paul, MN 55104 • (651) 644-2133 FOR SALE

COORDINATOR, PSEO and Concurrent Enrollment

Power Wheelchair for sale: Invacare Pronto M51- never used. Only $2,900. Call Denn at Minnesota State University, Mankato is seeking a Coordinator, 612-220-6788.

PSEO and Concurrent Enrollment. The position provides coordination and management of the campus based PSEO Minnesota Mobility: We speprogram as well as the concurrent enrollment program within cialize in affordable wheelchair high schools. The Coordinator serves as a contact and liaison vans. Contact us at 952-746for students, parents, high school counselors and officials and 1800.

MSU faculty and staff. Some of the requirements include experience with high school age students and counseling as 2000 Dodge handicap acceswell as demonstrated ability to problem solve, a Master’s sible van. 60,000 miles, one degree, excellent communication skills, the ability to work owner. $19,500 at 651-503-6493. collaboratively and independently and knowledge of higher education systems. Web site for complete vacancy notice can Leaf Collection Service. Startbe seen at http://www.mnsu.edu (link to Employment at MSU). ing at $59. Satisfaction GuarThe position is in the MSU Extended Learning unit and is .75 time anteed. Call for Free quote. 651(twelve months).

343-3944. Discount for people with disabilities.

Application materials should include the MSU Application for Unclassified Employment form (completed), a cover letter, 2004 Ranger 4 wheel drive resume and three professional references. Review of applica- heavy duty solo scooter. Never tions will begin November 28, 2005 with an expected appoint- used. Price $2500. Call 651-225ment date of January 2, 2006.

8956 on Sat and Sun only.

Application materials should be sent to: PSEO Coordinator Search Extended Learning Minnesota State University, Mankato AF 116 Mankato, MN 56001

Exceptional care starts with me.

Wheelchair accessible Ranch style home in Lino Lakes. Open floor plan, roll-in shower, large deck, wheelchair lift to finished walkout basement. $359,900.

MLS#3071400. Contact Pat Trow @ The MLS Direct Real Estate Group: 952-935-7103

FORRENT Lewis Park Apartments: Barrier-free housing with wheelchair users in mind. Section 8 subsidized. One- and twobedroom units. For more information on availability call (651) 488-9923. St. Paul, MN. Equal Opportunity Housing.

1999 Dodge Grand Caravan SE Minivan Sport V6 Auto 77,000 miles Entervan - power side door w/ramp $15,000 Power Wheelchair Invacare Pronto M51 Sure step Hardly used $2500 Call JP 651-497- Holmes-Greenway Housing: AAO/EOE and a member of the Minnesota State Colleges and 8042.

One- and two-bedroom apartUniversities System ments designed for physically Power Wheelchair Action handicapped persons. ConveATTORNEYPARALEGAL Ranger II, Storm Series, excelnient SE Minneapolis location. & LAW CLERK (3L) lent condition. Price $1500. Call (612) 378-0331 for availability information. Equal OpSMRLS seeks applicants for Call 952-445-8534. portunity Housing. immig. cases. Bilingual preferred; Atty. MN lic.; Paralegal degree, poverty law exp. preferred.

PROPERTY FOR SALE

2 bedroom, 1 bath home in South Minneapolis (Lake Salary DOE. Nokomis area) with some nice Please call 651-228-9823 for a accessibility features -such as a ramp at the front door and detailed job description. main level laundry. Call me – to see this home with beautiful Resumes to: wood floors, a built-in buffet, M.L.Giese built in cabinets and a wood SMRLS th 166 E. 4 St.; Suite 200 burning fireplace. Doug Haugen, Lakes Area Realty.

St. Paul, MN 55101 651-238-0456.

I am Fairview.

EO/AAE.

Sue, R.N., 29 years

Join my team at fairview.org/divjobs Come build a career with a passionate, progressive network of healthcare professionals. We believe that serving the health care needs of our communities begins with supporting the well being of our employees. Join our team and experience working in an environment where dignity, integrity, service and compassion guide everything we do.

Learn more about opportunities in • Nursing • Imaging • Lab • Respiratory • Pharmacy

Ideal location for group home, SILS, Adult Foster Care. Gorgeous duplex on large lot with access to private beach on White Bear Lake. Lower unit is 4BR, 1¼ bath, 1800 SQFT open floor plan, sunroom, small patio and main floor laundry. Flexible owner. Call Max @ 651303-7607.

• Physical Therapy • Operations • Administration • Medical Records • And more

fairview.org/divjobs • TTY 612-672-7300 • eoe

At A Glance - cont. on p. 20

Seward Square Apartments: We are currently accepting applications for our waiting list for barrier-free housing, in Minneapolis, that is federally subsidized. For an application, please call (612) 338-2680.

Equal Opportunity Housing.

RoomForRent:$300.00allutilities, includes phone, but not long-distance. Private Bedroom, shared bath and kitchen.

Located in Eagan, contact Dale at 651-686-8742.

November 10, 2005

23

Minnesota Ice Quad Rugby Team

By Patricia Goodwin

W

hen the movie “Murderball” came out last summer focusing on the game between Team USA and Team Canada at the 2004 Paralympics, the documentary captured the hard-hitting excitement of a sport called Quad Rugby. For many, the movie was an eye-opener about a game played by quadriplegics in what amounts to an armored chair.

But it was nothing new to Dominic Clemas, who started playing Quad Rugby almost 25 years ago, when he was 16 years old. Clemas is co-coach and a player on the Twin Cities based Minnesota Ice Quad Rugby team. He played Quad Rugby at the World Games and in the Paralympics from 1985 to 1992 and continues to play and coach today.

and Minnesota. That same year, the University of South Dakota hosted the first international tournament, with participating teams from Manitoba, Saskatchewan, North Dakota and Minnesota.

In 1988, the United States Quad Rugby Association was formed to help regulate and promote the sport.

thriving sports community for people with disabilities. I’ve been playing Quad Rugby since 1995 and it’s my favorite.

Playing sports helps you become more self- reliant, which carries over into your professional and personal life as well.”

According to Minnesota Ice team manager Todd Kemery, there are now some 40 teams in the U.S. in this fast-growing sport, with tournaments scheduled throughout the year.

Upcoming for the Minnesota Ice are tournaments in Milwaukee on Nov. 19-20, 2005 and in Chicago on Dec. 3-4, 2005.

half court. A player has 15 seconds to advance the ball into the opponent’s half court and must pass or dribble the Quad Ice Rugby Team ball every 10 seconds or a turnover is awarded. dent, so it is a blast to get back McCord and Mines, team meminto competition,” said Mines, bers include Jesse Honl, Keith “My primary purpose is to who is a shipping manager at Newerla, Eddie Brosnan, Jerblock players so I have a de- Cambria in LeSueur. “After emy Brown, Alan Buss, Ryan our injuries, quads are often Fisk and Danna Gerken. For very isolated. With this game more information about the you learn a lot about life and Minnesota Ice, call Kemery at it’s great to be part of a team.” 952-435-1946. The national Web site is at www.quad In addition to Clemas, Kemery, rugby.com. ■

“We practice on Wednesdays and Saturdays and currently have 11 people on our team,” Minnesota Ice team members include (left to right) co-coach/ said Kemery, who is sports director of the Minnesota Para- Both males and females are fensive chair,” said Adam “I started playing the game in lyzed Veterans of America. The welcome to play Quad Rugby, McCord, who had a car acciwith players given a classifica- dent at age 16, has been playtion number from one of seven ing Quad Rugby since 1997 classifications ranging from 0.5 and recently graduated with a – 3.5. The 0.5 player has the degree in genetics from the greatest impairment and is University of Minnesota. “The comparable to a C5 quad. Four faster, stronger guys carry the players from each team are al- ball. We have a range of ages lowed on the court at a time. on our team. The older guys Classifications of the four play- really know how to play the ers on the court must total no game and we can learn from more than 8.0 points at one them.” time.

Jody Mines, who is co-coach along with Clemas, has been A game consists of four 8 Minnesota Ice offensive player Eddie Brosnan (left) and co-coach/ playing Quad Rugby for 12 minute periods.

During the player Jody Mines. game, team players pass a vol- years. “I played football and 1981 through a program at Marine veteran suffered a spi- leyball back and forth while hockey in high school and Courage Center,” said Clemas, nal cord injury in 1982. “Cour- advancing into the opponent’s college before I had a car acciwho is a mechanical drafter age Center provides us with with Pinnacle Engineering. “It equipment and with a place to was just 16 months after my practice. We also couldn’t run accident. I love the competi- the team without our voluntion. We practice and play teers.

September through April so it’s a great way to stay in shape “The biggest benefit to this in the winter.” game is the sense of accomplishment we get. A new quad Quad Rugby is a sport with will sometimes think ‘I can’t do roots going back to wheelchair anything.’ The sport builds basketball and ice hockey and muscle and helps you get stronis essentially the quadriplegic ger. I didn’t play wheelchair equivalent to wheelchair bas- sports until after I moved to ketball. Developed in Canada, Minnesota in 1991. This is a Minnesota Ice team members racing across the court. the sport was originally called “Murderball” – hence the name of the movie – due to the aggressive nature of the game.

Quad Rugby is Welcome Carol Streasick to a fast paced, Care Planners full contact wheelchair sport Providing PCA services played indoors Excellent benefits & wages on a modified basketball court.

Serving all ages It was introduced in the United States in 1981 with the first Quad Rugby match in the U.S. played in 1982 between North Dakota

We really care!

651-645-9887 1885 University Ave. W. #151 St. Paul, MN 55104

“Faces of the Future” Exhibit

C

ourage Center will host the “Faces of the Future” exhibit at its Golden Valley location November 14-18, 2006. The exhibit features 24 self-portraits created by students with disabilities ages 6-14 primarily from the Whole Learning School in Hopkins.

Among the artists is Krystyna Dennis of Edina, 14, who attends the Whole Learning School. Her self-portrait, titled “A Kind, Nice, Loving and Creative Girl,” will also be part of a national traveling VSA arts project called “Discover What Art is...” For more information, visit the national VSA arts Web site at www.

The “Faces of the Future” art- vsarts.org. work was developed through VSA arts of Minnesota, a state- A reception for the young artwide non-profit organization ists, which is open to the pubwith the mission of promoting lic, will be held in the Courage quality, accessible arts experi- Center atrium on Tuesday, ences for people with all types Nov. 15, from 10 a.m. to 2 p.m. of disabilities. It is an affiliate Courage Center is located at of VSA arts in Washington, 3915 Golden Valley Road. CourD.C. and is part of a national age Center is a non-profit rehaand international network of bilitation and resource center organizations, which is creat- for people with physical dising a society where people with abilities, brain injuries, speech disabilities can learn through, or vision impairments, or hearparticipate in and enjoy the ing loss. For more information, arts. visit www.courage.org. ■

November 10, 2005

24

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