June 2006 Edition - Access Press

June 10, 2006

Inside ■ Disabled Immigrants Assoc.— p. 10 ■ Disabled Immigrants Assoc.

Written in Somali— p. 10 ■ Medicaid Town Hall Meeting— p. 12

1

“You can’t get anywhere in politics these days

unless you’re quadriplegic.”

– Sam Sullivan, Mayor of Vancouver, BC

Page 2 Nonprofit Org. U.S. Postage PAID Mpls. MN Permit No. 4766

Volume 18, Number 6

Minnesota’s Disability

Community Newspaper

June 10, 2006

Local Leader Receives Award MN Work Incentives Connection Founder Honored

by Anita Boucher

O

Barb Smith is only the second non-SSA staff person to receive the Return To Work Award

n May 11th, Barb Smith of the Minnesota Work Incentives Connection received the Skip Kruse Memorial Returnto-Work Award for “tireless energy, compassion and vision, demonstrated in promoting the use of Social Security Administration (SSA) employment support programs for people with disabilities.” Barb is only the second non-SSA staff member to receive such an award.

SSA Area Director Paul Demers and Joani Werner, Area Work Incentives Coordinator, was kind enough to nominate Smith for this honor on behalf of Minnesota’s local SSA offices.

Smith cites many people as inspirations for her work.

“Skip Kruse possessed the qualities of a great advocate.

To be put in the same category with him is a tremendous honor. A driving motivation for me is the experience I have had with people with disabilities in both my personal and professional lives. I am inspired by the many people with disabilities who have triumphed over significant barriers to employment. To accomplish what they have takes courage, persistence, optimism and likely a good sense of humor.”

Praise for Smith has come in from many quarters. John

Schatzlein of the Work Incentives Advisory Group cites Smith for making a difference in the community.

“Barb and her staff have significantly improved access to information about the benefits and service provisions available in returning to work for a person who has acquired a functional limitation.” Joani Werner noted the outstanding service Smith provides, “Barb is very dedicated to helping our clients understand the complexities of Social Security’s return to work programs!” Tim Benjamin of Access Press also notes her unwavering commitment to what’s best for the people.

“I’ve referred many people to

Changes Ahead In Managed Care

by Anne L. Henry, MN Disabiltiy Law Center

T

he 2006 Minnesota Legislature adopted several significant changes for persons with disabilities who use Medical Assistance health coverage.

The legislation, developed by disability advocates and authored by Representative Finstad and Senator Lourey, sets a path for further development of managed care options for persons with disabilities in Minnesota. The most significant of the changes affect persons who are eligible for both Medicare and Medical Assistance beginning in January 2007.

Background In Minnesota, there are approximately 95,000 persons eligible for Medicaid (Medical Assistance) due to disability. Two of the three separate eligibility groups who qualify for Medical Assistance (MA), families with children and the

elderly, are now required to join a managed care plan, about 286,000 persons. Efforts are underway to include persons with disabilities in managed care under MA. Key issues include whether participation in a managed care plan is voluntary or mandatory and whether the managed care health plan will include continuing or long-term care services in addition to basic health care.

Of the 95,000 persons eligible for MA due to disability, over 40 percent are eligible for Medicare coverage as well.

Persons with both Medicaid and Medicare are called “dual eligibles.”

Currently, there are at least three separate types of managed care models for persons with disabilities in Minnesota; one is now operating and two are under development. The three types of man-

aged care models in Minnesota include: Minnesota Disability Health Option (MnDHO) The Minnesota Disability Health Option includes Medicaid and Medicare benefits as well as both basic health care and continuing or longterm care services for persons with disabilities. Two separate projects operate under the MnDHO authority: AXIS/ UCARE in the metro area is serving persons with physical disabilities, 63 percent of whom also have a mental health diagnoses and Partners Choice Network for persons with developmental disabilities connected with Mount Olivet Rolling Acres in Carver, Scott and Hennepin Counties. The MnDHO program is patterned after the Minnesota Senior Health Option, which is available across Minnesota. The MnDHO pro-

gram is required to be voluntary so that a person may choose to join or leave each month.

Medical Assistance Managed Care Medical Assistance managed care, known as prepaid Medical Assistance (PMAP), does not cover persons with disabilities. PMAP covers lowincome families with children and seniors over 65.

Currently, there is a legislatively established DHS stakeholder group working to develop a plan for Medical Assistance managed care options for persons with disabilities for implementation by January 2007. This stakeholder group, led by Assistant Commissioner Brian Osberg, involves only the Medical Assistance program and is limited to basic health care.

Medicare Special Needs Plans Medicare is a federal program funded solely with federal funds and enrollee co-payments, deductibles and cost sharing. Several years ago, federal legislation established Medicare special needs plans that allow health plans to focus on one of several populations of special needs individuals and offer managed care plans for Medicare covered services. Minnesota currently has nine Medicare special needs plans, called SNPS (pronounced “snips”) for seniors and two plans specializing in services for persons with disabilities.

The two Medicare SNPS for persons with disabilities are AXIS/UCARE in the metro area and AbilityCare, which is part of South Country Health Alliance in south central Minnesota.

Managed Care - cont. on p. 13

the Work Incentive Connection to get a work analysis done, and every one has come back to me with only praise for Barb, the staff and the whole organization. They truly have the best interests of the individual in mind, rather than the interests of some other institution.”

The Kruse award is a welldeserved recognition of Smith’s local, regional and national leadership on work incentives issues. In 1993, Smith initiated the Minnesota Work Incentives Coalition, which sponsored training on a variety of Social Security, Medical Assistance and other work incentive topics. Smith was also the Coalition’s liaison to the Minnesota Consortium for Citizens with Disabilities. She served on the Consortium’s Work Incentives Committee, which promoted legislative changes leading to the creation of Minnesota’s Medical Assistance for Employed Persons with Disabilities (MA-EPD) program.

In January of 1999, Smith led the creation of the Minnesota Work Incentives Connection, which helps people with disabilities navigate complex rules regarding the impact of work on their government benefits. Services are statewide and include: a toll-free telephone hotline; comprehensive Benefits Analysis reports; outreach and training on topics related to work and benefits; a State Work Incentives Support Center; and an Employment Support Network. The Connection conducts extensive evaluation, which demonstrates that receiving such assistance helps people with disabilities work more and reduces their dependence on government benefits over time.

Award - cont. on p. 7

June 10, 2006

2

Tim Benjamin, Editor

T

his month Access Press is looking at myasthenia gravis (pg. 4 ) When we first started talking about this disability we were not too sure where we would find someone with myasthenia gravis for a personal view; none of us seemed to know much about it. We all decided to do a little research and spend some time thinking about it, and we acknowledged that

maybe we would just have to highlight a more well-known disability. Then we discovered at the Access Press board meeting that JoAnn Enos, one of our longtime board members and board secretary, lives with myasthenia gravis. I had thought that I had learned quite a bit about JoAnn over the years, but I had no knowledge of her having this disability.

Learning this underscored the need for attention and press coverage. Then in a second wake-up incident, as soon as we started doing research and found some interesting information from a national organization, we discovered that that organization is right upstairs in our office building.

How blinded, uninformed can we be? How many hidden disabilities do we, even as the disability community, not know much about? It’s possible that some of our close friends and colleagues may be

struggling with a “hidden” disability and we are not even aware. I also think this story of discovery underscores our need to constantly become more aware of the needs of, not only our fellow people with disabilities, but all in society who are struggling with things not recognized as disabilities but which in many ways are disabilities! How much of a disability is it to live with a below-poverty income, as many of us with disabilities do right along with our PCA’s.

How able are people with alcohol and/or drug addiction?

Or those who are functionally illiterate or unable to speak fluent English?

of education, which only enables people to get low-income jobs. But this organization is doing a great job and they’ve asked for help from our larger disability community in Minnesota. I think it’s important that we do help, and I encourage the directors of the major disability organizations to offer these folks some help in whatever form. They need classrooms or space they can use as classrooms, as well as people willing to volunteer to teach the English (ESL) that these immigrants will need to find their way through our maze of social services. They also need help finding funding resources—yes, I know we all need help with this, but let’s Those questions are on my reach out! mind in part, I guess, because another article we are printing As many of you know, the this month comes from the state’s personal care attendant Disabled Immigrant Associa- program has been making tion, representing a commu- some changes. Many of the nity where one of the major changes are needed, but the problems is literacy and lack unintended consequences

may be very costly. There are definitely some increases in administrative costs, both to the provider agencies and to the state agencies that oversee the program. Unfortunately, the administrative cost increases to the provider agencies will probably trickle down to mean lower wages for the PCA’s themselves. Lower wages for PCAs means a smaller pool of available PCAs for the clients. With a smaller pool of PCAs, the unintended consequences will mean a faster turnover of PCAs, resulting in decreased quality of care because of lack of continuity and knowledge of the client. Also, fewer PCAs very well could mean some consumers may not be able to stay independent because of lack of personal care support.

cess through a common form for doctors’ orders is a fabulous idea, but how many of us often have drastic changes in our need for PCA support (the kind that require new doctors’ orders)? The bigger problem in this area is the backlog of nursing assessments for PCA hours. I would like to see the Department of Human Services streamline the assessment process rather than be concerned with doctors’ orders. In no way am I saying doctors orders aren’t an absolute necessity but I think there are more important issues to be concerned with. I think everyone involved had very good intentions for increasing safety and quality in the program and saving money by cutting out fraud, but I am afraid that those will not be the only It’s very important that the results. Stay tuned, stay inprovider agencies have cur- formed. ■ rent documentation from doctors, and streamlining the pro-

Letter To The Editor ...

To the Editor: I’m concerned regarding ongoing PCA Program changes that may disempower consumers and jeopardize their health and safety. Most consumers rely upon the Minnesota PCA Program for assistance with life’s basic activities (e.g. bathing, using the restroom, dressing, preparing meals, eating).

I offer a few examples to support my fears about the changes recently implemented by the Department of Human Services (DHS).

First, during the past few years, DHS and public health nurses have scrutinized virtually each and every minute of PCA service approved; there is no blood left in that turnip.

Second, the “2003 PCA Consumer Survey” points out that consumers feel PCA wages, which directly relate to DHS reimbursement rates, are too

low and create difficulty recruiting and retaining quality PCAs. I believe the wages are not only uncompetitive—they are far below a living wage.

Many PCA agencies cannot even offer affordable health insurance for employees. Additionally, PCAs aren’t compensated for travel time or expenses between consumers or consumer-requested errands, which further decrease competitiveness; most communitybased service providers reimburse for these expenses.

Third, a backlog in DHS background check processing last summer/fall created a significant bottleneck to accessing new PCAs for some consumers. Some consumers needed to wait to replace unreliable staff or depend on family and friends. Consumers seeking PCAs and not having an available family/social network may have postponed or been deprived of these essential life-

sustaining activities; DHS doesn’t offer safety nets for consumers lacking adequate access to qualified and available PCAs. Fourth, in response to the “Health Care Services Study: Findings and Strategies for Savings,” DHS implemented requirements that PCAs must have PCA provider numbers in order for personal care provider organizations [PCPOs] to be reimbursed for services.

This process is intended to catch consumers and PCAs committing fraud--well-intentioned but poorly timed. The new PCA provider number process may delay reimbursement to PCPOs for services provided by new PCAs. This may cause cash flow concerns (i.e. being required to pay employees for services performed before receiving payment from DHS). Some PCPOs may respond by waiting to deploy new PCAs until

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 Editorial Assistant ......................................................................................................... Bret Hesla 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 • Web site: www.accesspress.org

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

their PCA provider numbers have been received, thereby ensuring timely payment from DHS for services provided.

This process may take up to three weeks, thereby creating an industry labor-supply bottleneck. Many PCA candidates seeking work may be unable to wait three weeks to begin and instead choose other opportunities; an industry labor-supply diversion. Here again, consumers may lack adequate access to qualified and available PCAs. Fifth, more recently, DHS has altered the flexible use option to reduce the time period consumers can use their approved PCA Program hours. Before, consumers could flexibly use their approved hours throughout a 12-month period. Perhaps they would save hours for extra help needed during illnesses, vacations, winter, or summer. Now, consumers’ flexible use period is only six months. Basically, DHS has disempowered consumers in an attempt to recapture unused hours every six months— weakening a consumer-driven safety-net and forcing consumers to alter their lifestyle. Sadly it is more likely that consumers will “dump” hours twice a year (i.e. pre-pay PCAs for anticipated future needs). It is important to note that “dumping” is considered fraud. Ironically, DHS has increased the likelihood of such activity by nature of their new policy— consumers and PCAs will attempt to cope as best as possible in order to protect their health, safety, security, and liberty. The cost to DHS and taxpayers will increase not only due to “dumping,” but also due to increased enforcement, investigation, and prosecution costs—the potential costs far outweighing any savings.

Sixth, DHS recently conducted an audit of PCPOs and is cracking down on the lack of current physician orders in consumers’ files. DHS requires PCPOs to have current physician diagnosis documentation justifying PCA Program eligibility and utilization. However, DHS already requires annual consumer care plan reviews by independent public health nurses. They review past year diagnoses, condition changes, and service utilization and then decide upcoming year service

allowances. Public health nurses spend about an hour and a half with consumers; much more time than traditional physicians spend with consumers discussing PCA needs. Perhaps DHS or the public health nurses would be more appropriate keepers of physician statements? After all, they’re the ones charged with determining eligibility. It seems like a more efficient system avoiding additional administrative burden upon Letter - cont. on p. 13

This Month's Symbol: Audio Description

A

udio description (AD) is simply spoken descriptions that explain visual (non-audio) portions of performances to people who are blind or have low vision and need accommodation to have equal access. The AD symbol lets people know that this service is available. For example, the June theater festival Fast Fest 2006 (see Events section) is offering AD to anyone who registers in advance and specifically requests it.

They could use the AD logo on their registration information as well as at the festival itself.

not offered in the regular audio presentation. Thanks to the work of dedicated organizations around the world, audio description is now offered in selected movie theaters, videos, live theatre, and television programming, and is making its presence felt in a variety of new venues.” (source: www.adinternational.org.)

Access Press wishes to encourage all of its readers and advertisers—individuals, corporations, nonprofit agencies and private companies—to incorporate disability access symbols into the services they proAudio Description Interna- vide. It is good business to let tional describes AD as “the the public know how you are descriptive narration of key accessible. visual elements of live theatre, television, movies, and other For more information about media to enhance their enjoy- disability access symbols, or ment by consumers who are to download electronic TIFF blind or have low vision. AD copies, please visit the Graphic is the insertion of audio expla- Artists Guild at www.gag.org/ nations and descriptions of the resources/das.php. To obtain settings, characters, and ac- Mac or PC floppy disk copies tion taking place in such me- of all the symbols, contact the dia, when such information Graphic Artists Guild Founabout these visual elements is dation at 212-791-3400. ■

June 10, 2006

Help With Social Security

by Jim Czechowicz, Mpls Social Security Public Affairs Specialist The ABC’s of Getting a Social Security Replacement Card Just the other day one of my neighbors stopped me on my driveway and said that she had lost her Social Security card.

She wondered what she needed to do to replace it.

documentation to prove legal immigration status and work authorization.

It is very important to remember that all documents must be either originals or copies certified by the issuing agency.

We cannot accept photocopies or notarized copies of docuI told her that replacing a lost ments. or misplaced Social Security card is a free service and that We will mail your replacement we try to make the process as Social Security card and numsimple as possible. But I also ber to you as soon as we have told her that the law requires all of your information and anyone applying for a replace- have verified your documents. ment card must offer specific proofs of identity and citizen- It is also important to keep in ship. If you or someone you mind that you are limited to know find yourself in the same three replacement cards in a situation as my neighbor, here year and 10 during your lifeis important information to time. Legal name changes and keep in mind. It can make other exceptions, such as your application process go changes in non-citizen status more quickly and efficiently. that require card updates, do not count toward these limits.

To get a replacement card, you Also, you may not be affected will have to fill out an Applica- by these limits if you can tion For A Social Security Card prove you need the card to pre(Form SS-5) www.social vent a significant hardship. security.gov/online/ss-5.html and show us certain documents. Finally, I would like to share with everyone the same adWhat documents can you use? vice that I gave my neighbor.

To prove identity, an accept- You should treat your Social able document must be cur- Security number as confidenrent (not expired) and show tial information and avoid givyour name, identifying infor- ing it out unnecessarily. Keep mation (date of birth or age) your Social Security card in a and preferably a recent photo- safe place with your other imgraph. Social Security would portant papers. Do not carry it accept a U.S. driver’s license with you unless you need to or passport, or a state-issued show it to an employer or sernon-driver identification card. vice provider. This will miniIf you do not have one of these mize the chances of losing your documents or cannot get one Social Security card or having within 10 days, we will ask to it stolen. see other personal identity documents, such as an em- If you would like more inforployee ID card, a school ID mation about how to get a Socard, a health insurance card, a cial Security replacement card, U.S. military ID card or an just visit our website at adoption decree. To prove www.socialsecurity.gov/ citizenship, acceptable docu- ssnumber. If you do not have ments include a U.S. birth cer- access to the Internet, you can tificate, U.S. consular report call our toll-free number at of birth, U.S. passport, Cer- 800-772-1213 (TTY 800-325tificate of Naturalization or 0778) and ask for the publicaCertificate of Citizenship. tion, Your Social Security Non-citizens must provide Number and Card.

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You May Qualify For Extra Help with New Medicare Prescription Drug Program Costs By now, nearly all Americans who may be eligible for the new Medicare Prescription Drug program probably know at least something about this historic, cost-saving program.

But have you also heard about the extra help that could bring you big savings on your monthly premiums, annual deductibles and prescription co-payments? That extra help could be worth an average of $2,100 per year for those who qualify.

You could qualify for the extra help if you have limited income (below $14,700 for an individual or $19,800 for a married couple) and resources (below $11,500 for an individual or $23,000 for a married couple). To learn more or to apply now, visit Social Security online at www.social security.gov/prescriptionhelp or call Social Security tollfree at 800-772-1213 (TTY 800-325-0778).

After you apply, Social Security will review your application and let you know if you qualify for the extra help. If you qualify, you will need to enroll in a Medicare-approved prescription drug plan to get help with your prescription costs.

If you have been putting off making a decision about applying for the prescription drug program, I would encourage you to act as soon as possible because the deadline for initial enrollment in the Medicare Prescription Drug program ends on May 15, 2006.

To take advantage of these opportunities to enroll in the Medicare Prescription Drug program and, if you qualify, the extra help that may save you additional money, you should act now. ■

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Disability Technology

Breaking the Sound Barrier

by Jen Mundl

L

isa sat quietly in the classroom not participating in conversations around her. Her teacher originally thought Lisa was shy, until one day he was talking to her and she did not respond. A hearing test showed a significant hearing loss to where she was unable to recognize sounds and language.

That explained a lot. Luckily for Lisa, her teacher noticed and her difficulties could be addressed with assistive technology. (Unfortunately, too many students like Lisa remain undiagnosed.)

To understand assistive technologies, it is useful to know a little about sound. Sound is measured in two ways: by its loudness or intensity (measured in units called decibels, dB) and its frequency or pitch (measured in units called hertz, Hz). Impairments in hearing can occur in either or both areas, and may exist in only one ear or in both ears. Hearing loss is generally described as slight, mild, moderate, severe, or profound, depending upon how well a person can hear the intensities or frequencies most greatly associated with speech. Generally, only people whose hearing loss is greater than 90 dB are considered deaf.

Sensorineural hearing losses result from damage to the delicate sensory hair cells of the inner ear or the nerves which supply them. These hearing losses can range from mild to profound. They often affect the person’s ability to hear certain frequencies more than others. Thus, even with amplification to increase the sound level, a person with a sensorineural hearing loss may perceive distorted sounds, sometimes making the successful use of a hearing aid impossible.

A mixed hearing loss refers to a combination of conductive and sensorineural loss and means that a problem occurs in both the outer or middle and the inner ear. A central hearing loss results from damage or impairment to the nerves or nuclei of the central nervous system, either in the pathways to the brain or in the brain itself.

Accommodations Lisa’s diagnosis was a conductive hearing loss resulting from reoccurring untreated ear infections. Lisa worked with audiologists and doctors to find ways for her to interact more successfully in the classroom. One audiologist suggested she use an Assistive Listening Device that amplified the speech of the teacher Types of Hearing Loss directly into her new digital Physiologically speaking, hearing aid. It did the trick and hearing loss is classified into soon Lisa began laughing with two categories. Conductive her classmates. hearing losses are caused by diseases or obstructions in the Accommodations and assisouter or middle ear (the con- tive devices are required by duction pathways for sound to many people with hearing imreach the inner ear). Conduc- pairment to access the educative hearing losses usually af- tional programming in a classfect all frequencies of hearing room setting, communicate evenly and do not result in with others and work effecsevere losses. A person with a tively with coworkers. Each conductive hearing loss is usu- person’s needs must be indially well-served with a hear- vidually evaluated, but the foling aid or can be helped medi- lowing is a generic introduccally or surgically. tion to the main types of assistive technology for people

with hearing impairments.

Assistive Listening Devices Assistive listening devices include a large variety of technologies designed to improve audibility in specific listening situations. Some are designed to be used with hearing aids or cochlear implants, while others are designed to be used alone. Many that are used in conjunction with hearing aids require a telecoil (T-switch).

Assistive listening devices can usually amplify a signal, but their primary purpose isn’t to make a signal louder. Rather, they place a microphone close to the sound source, so that it becomes louder compared to the other sounds in the environment. Assistive listening devices improve the ability to hear because they make the desired sound stand out from the background noise.

Closed Captioning Closed captioning is the text that goes on the bottom of the television screen to inform deaf or hard of hearing people of what is being said. Look for a small box with letters “CC” inside of a small box with a cartoon balloon dialogue marker, to verify if the programs are closed captioned.

Cochlear Implants A cochlear implant is used for people with severe to profound hearing loss or those who show little or no benefit from hearing aids, yet have some hair follicles. It is a controversial device, especially when it is implanted in young children.

This very tiny piece of electronic equipment is put into the cochlea during an operation. It takes over the job of the damaged or destroyed hair cells in the cochlea by turning sounds into electrical signals that stimulate the hearing nerve directly.

Sound - cont. on p. 15

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June 10, 2006

4

Mental Health Focus

My Eyes Are Open Now: Self Care Is The Best Healthcare Myasthenia Gravis

by Nancy Sopkowiak

by JoAnn Cardenas Enos

I

was diagnosed with myasthenia gravis 22 years ago. My symptoms at that time were generalized muscle weakness, double vision, droopy eyelids, difficulty chewing, swallowing, and holding facial expressions, change in voice, limb weakness, and shortness of breath.

Shortly after I had a thymectomy, it went into a remission.

I have had many flare-ups since my diagnosis, when I went on drug called Mestinon (pyridostigmine).

Myasthenia gravis was all very new to me at the time. The name alone scared me. What was going to happen to me?

Where would I go for help?

Who would help me? And why was I always tired? I didn’t know anything about it. I certainly didn’t know any of the symptoms or treatments. When I started to do research, I soon discovered that there was no known cure for myasthenia gravis. So here I was with so

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I have since learned a great deal about myasthenia gravis.

Thanks to medical research, there has been remarkable advancement in the understanding of what myasthenia gravis is and what its symptoms are (though more research still needs to done). We know now

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Tonight I took a break from writing to do some strength training. I had been doing a bunch of paperwork today, and I kept putting off the workout.

It’s hard to write about self care when you’re not doing it.

Sometimes I’m real consistent other days I’m not.

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O

I became so depressed that I was unwilling to try any physical therapy or physical activity.

On top of that, the muscle pain and weakness with my fibromyalgia gets worse when I’m not active. Within few months, I went from relatively independent to so weak that I couldn’t even lift a glass of water. Then I got more depressed because I couldn’t take care of myself or my kids, so I gave up. My family had to kick me in the butt to get me started again. It took many months— and a lot of effort—to get me I remember a few years ago I back to my early status of relawas on bed-rest due to really tive independence. painful complications from colitis. (Colitis is a colon dis- I’ve generally had the most ease. Trust me, you do not want success with exercise when I the details.) Because of the pain, am excited about achieving an exercise goal. That spring I set a goal to walk around Lake Calhoun by August. In May I Much has been learned about myasthenia gravis during the could only do a couple of past 20 years. What was once a relatively obscure condition blocks. The day I decided to of interest primarily to neurologists is now the best under- go for it, my Aunt Lynne went stood autoimmune disease. Myasthenia gravis is the most with me. She patiently walked common primary disorder of neuromuscular transmission. at my pace. I was moving pretty The usual cause is an acquired immunological abnormality, slowly, and I had to stop to rest but some cases result from genetic abnormalities at the several times. It was the best neuromuscular junction. A wide range of potentially effec- feeling when we got all the way around. I was so happy tive treatments are available. that I could share that moment There are approximately 36,000 cases of myasthenia gravis with her because all along she in the United States. However, it is probably underdiagnosed, had shared my struggles. and its frequency is probably higher. Early studies showed that women were more often affected than men; more recent At some point, it really hit me data suggest the opposite. The most common age at onset is that I don’t get to pick my the teens and twenties for women and the 60s and 70s in men. health problems, but I do have As the population ages, the average age at onset has in- a choice about taking care of creased. Now males are more often affected than females, myself. Clearly that makes a huge difference in our quality and the onset of symptoms is usually after age 50. of life. When I focus on self Patients with myasthenia gravis come to the physician com- care like exercise, I can achieve plaining of specific muscle weakness and not of generalized more independence. Lately I fatigue. Ocular motor disturbances (eye issues) are the initial have been getting a big kick symptom of myasthenia gravis in two-thirds of patients. out of driving my car and goDifficulty chewing, swallowing, or talking is the initial ing to hear music with friends. symptom in one-sixth of patients, and limb weakness pre- Life has become much more fun because I have more ensents in about 10% of cases. ergy and less pain.

Source: James F. Howard, Jr., M.D. Department of Neurology, The University of North Carolina at Chapel Hill My physical therapist, Holly is always telling me about the benwww.myasthenia.org efits of exercise. She says exercising helps prevent or lift de-

much left to do yet in my life— that the disease is caused by if I only had the energy. an autoimmune attack directed against the neuromuscular The hardest part of having junction (the link between the myasthenia gravis was explain- thymus gland and the immune ing to my family exactly what system). (See sidebar below).

I had, what my symptoms were and why I could talk in the Myasthenia gravis has become morning yet by late afternoon a way of life for me now. I am nobody could understand me. not scared anymore. I now To this day my children still know why I get tired, and when say, “Mom your eye is droop- I do; I try to rest. I would like ing.� I think now they know. to add my thanks to all of the After my diagnosis I decided parents and family members to have the thymectomy. I re- who have been in the forefront ally needed something to hap- helping bring about more pen, and I was scared. After awareness regarding myasthethe surgery my symptoms went nia gravis. I also thank those into remission. What a relief! I who have advocated on my was happy that I decided to behalf. ■have the surgery.

pression, alleviates pain, burns calories—which can keep the extra pounds off, is good for the heart, improves asthma, boosts self esteem, builds muscle, helps you sleep better, and relieves stress. It’s hard to argue when you know their right.

My experiences and coach training helped me discover that setting achievable goals is an enjoyable way to get healthy, physically and mentally. I’ve also found, for myself, that I’m more likely to achieve ambitions if I tell somebody my plan. For the last few years I’ve had a target

“. . . I don’t get to pick my health problems, but I do have a choice about taking care of myself.� to swim the half mile across Red Cedar Lake at my parent’s Wisconsin home. The first year I made it about 10 yards, and last year I swam over halfway across. The family swims across together every year. It’s a really great tradition with three generations swimming, the ages span from 11 to 70.

My dad is the oldest swimmer in the group; he started as a kid on the Hibbing Junior High swim team. I figure if my 70 year old father can make it across the lake, there is hope for me. My parents plan to sell their lake home soon, so this summer will probably be my last chance. My goal is to get in better shape by August, and swim across the lake. I’ll let you know how it comes out.

Hopefully sharing my plan with you will help me to stay motivated.

Do you have a self care story or a goal you want to achieve?

I would love to hear your experiences and plans. If you want to share something, please email me at NancyLife Coach@msn.com. Thanks. â–

Diamond Hill Townhomes We are currently accepting applications for our waiting list at Diamond Hill Townhomes, a great property located near the Minneapolis International Airport.

We have two and three bedroom townhomes that are HUD subsidized and rent is 30% of the total household's adjusted gross income.

We have a large number of mobility impaired accessible units and we are scheduling appointments for persons in need of a mobility impaired accessible unit immediately.

To schedule an appointment please call (612) 726-9341.

June 10, 2006

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2006 State Legislative Recap

Service Animals: Voting Equipment Ensured Rules For Public Interaction In All Townships

by Clarance Schadegg

by Mai Thor

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he 2006 legislative session began with controversial debates over several election bills. The most heated debates were fueled by issues such as photo ID requirements, proof of citizenship for voter registration and the presence of voter fraud in Minnesota. The session ended, however, with a relatively non-controversial Elections Omnibus Bill that passed in the Senate 64-0 and in the House, 129-3.

The election bill that was most closely watched by people with disabilities, Senate File 2591 and House File 2608, would have permanently exempted Minnesota townships from using accessible voting equipment in their local elections.

After the disability community voiced great opposition to the bill, the Senate and House committees recognized the need to come to an agreement with the townships and encouraged both parties to find a compromise. This was not an easy task, and the bill was idle during several weeks of negotiations. Fortunately, the bill never got a hearing in the Senate. However, an amended version of the bill made its way to the State Government Finance Committee in the House, where it ultimately passed and was added as a provision to the State Government Finance Omnibus Bill.

This bill’s provisions were eventually re-assigned to new bills, which left the township bill in limbo. Two weeks before the session ended, the townships came back with a new amendment. This amendment allowed the townships to share the costs of accessible voting equipment within their respective counties, lowering the cost for each of them.

Counties would administer

elections for the townships by makes permanent language working with the vendor of the that governs how to process accessible voting equipment voter registration applicato see to its programming tions, includes language clarineeds. At this point, an Elec- fying that cell phone bills can tions Omnibus Bill was being be used for same day regisnegotiated by both houses and tration the Office of the Secretary of •Prohibits Deceptive Election State (OSS). The amendment Practices—prohibits misallowing towns to share equip- leading people about elecment costs was approved by tions all parties and added to the bill •Safe at Home Address—conduring the final minutes be- fidentiality program for surfore it was voted on in the vivors of domestic violence House and Senate.

•Paper Ballot Requirement •Election Judge TranscripThe Voting Rights Coalition tion—allows election judges is to be commended for its to transcribe ballots in case hard work once again this year the ballot from the accessible on election legislation at the voting machine cannot be capitol. The coalition’s mem- read by the counter bers fight tirelessly to make •Full Voter Information Bill— sure that good policies, such allows the OSS, the Camas the one stated above, are paign Finance Board and pubpassed into law. In addition to lic libraries to provide links the township issue, the follow- to candidates’ Web sites ing are other disability-related •Post Election Audit—verifies provisions of the Elections that electronic ballot counters Omnibus Bill: are working accurately •Anti-Caging Bill—prohibits •Deaf Voters Provisions— tactics used by political parprovide easier access to ASL ties in other states to generate interpretation at caucuses and lists of voters to challenge polling places •Absentee Voting during Pan•Agent Delivery of Ballots— demic—provides that a voter provides that residents of can vote absentee during situgroup homes and battered ations of quarantine or other women’s shelters can appoint threats to public safety an agent to deliver absentee •Financial Disclosure for Loballots cal Candidates—insures that •Creation of Voting Machines those already required to file Working Group—co-chaired reports have to submit useful by the Minnesota Disability information Law Center and Election In- •Campaign finance—defines tegrity—Minnesota; this magnets with contact inforgroup will make recommen- mation of an elected official dations about accessible vot- as non-campaign disburseing machines ment The rest of the provisions include: •Tribal ID’s—can be used if issued by a federally recognized tribe to register to vote on Election Day •Approval of HAVA Rules—

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he relationship be tween master and dog guide is built on hard work and consistent training.

My service animal was trained to guide me and his main function is to make sure we get to our destination safely. “We don’t simply pick up the harness and say, ‘Take me to Walgreen’s’ said Rebecca Kragnes, President of the Minnesota Guide Dog users (MNGDU) in a recent interview. “Rather, I instruct my guide to go forward, and that is what he does as we maneuver on sidewalks and around obstacles in our way.” Each dog that graduates as a guide has undergone at least a year and a half of training with extremely talented and gifted instructors. These dogs are different from average pets, and Kragnes cautioned the public about several taboos when relating to dog guides.

The first taboo is petting a dog guide. Although some people allow their animal to be stroked by strangers while on the job, I prefer people to keep their hands off of my dog while it is in harness. A guide is not a pet.

Always ask somebody who has a service animal if his/her dog can be petted. If the owner of the assistance animal agrees, he/she will most likely take time to remove its harness. The harness is what cues a service animal it is in a working mode.

Mrs. Kragness stated, “I want to make sure the bond is solid between us before I allow that kind of interaction. As a general rule, never touch, talk to, feed, or otherwise interact with To read the bill as passed, re- a dog guide in or out of harness fer to the Minnesota State without the handler’s permisLegislature’s Web site at sion. Some handlers have an www.house.leg.state.mn.us. absolute no interacting policy.”

Mai Thor is the voting outreach advocate for the Dis- Another taboo is feeding a dog ability Law Center. ■ guide. Never feed a guide food other then what it is used to eating. Frisco, my retired guide

dog worked for at least ten years. He was sometimes slipped food by people who did not realize how much damage their well-intentioned actions caused both the dog and the master. After all, I fed him pretty well. But the temptation for some folks is to feed a dog scraps from their plates, food they’ve discarded, or to handfeed the dog a treat like a cookie. What all people need to be aware of is that a dog guide is orientated to one type of food. If the service animal is given something it is not used to, it will get terribly ill.

One day when I was on my way to work, a lady told me

Clarance Schadegg with Frisco (retired) and Telly

in the unwanted and unnecessary premature retirement of the guide. Owners of aggressive dogs have a responsibility to keep their animals under “A dog guide is an control. It takes only a mere extension of its owner. seconds for an unprovoked dog Interfering with a dog attack, but it may take months or years for the dog guide to while on duty could recover from such an incident. lead to bodily harm of Fortunately for Frisco and me, both the dog and the the aggressive dog attacks were single incidents that took place person it guides.” over many years and he conthat my dog had relieved him- tinued to work until he was self three times. And each time ready to retire. he discharged a bloody smelly diarrhea. This was almost fa- Each of these taboos is just a tal for Frisco; it took a week basic application of common for him to recover from what sense. A dog guide is an extensomebody thought was an act sion of its owner. Interfering of kindness. I missed a week with a dog while on duty could of work to give him around- lead to bodily harm of both the the-clock medical help. For the dog and the person it guides. first four days of recovery, it “People who are not well inwas hard for me to get Frisco formed about etiquette think to drink water. The veterinar- nothing of trying to feed, pet, ian gave my dog a week-long or distract the dog in some prescription of antibiotics and way without obtaining permisImodium LD. Nobody other sion. It’s refreshing to see more than the owner should feed the and more parents telling their kids they shouldn’t touch a dog. working dog. It’s even more Another problem is people refreshing and quite amusing who allow their aggressive to see kids lecturing their parunleashed pets to roam loose ents about inappropriate interwithout supervision. Frisco actions with our guides,” said and I were attacked five times President Kragnes. over an eight year period of time. Though he was unin- Of course, assistance animals jured, some assistance animals need time to run and romp like experience trauma or bite any dog. These service aniwounds that sometimes results Animals - cont. on p. 12

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6

June 10, 2006

News At A Glance . . .

Wilderness Inquiry Offers Canoeing and Kayaking Trips Kayak Through the Apostle Islands, Lake Superior Wilderness Inquiry, a non-profit organization that integrates people of all ages, backgrounds and abilities through wilderness adventures, will offer three-and five-day “Apostle Islands Sea Kayak” adventures most weekends throughout the summer.

“These trips provide a means for people to safely kayak the Apostles with a fun group of people,” said Lisa Butler, Wilderness Inquiry’s sea kayak specialist. “People not only have a great time but they also gain a new appreciation for what people are capable of achieving.” Participants will explore sea caves, sandy beaches, lighthouses and sunken shipwrecks as they paddle this 22-island archipelago on the south shore of Lake Superior. After a good day’s paddle, participants take in the sweeping views and sparkling beaches of the lake, while recounting the day’s adventure with a group of new friends.

No previous kayak experience is required as professional guides are provided for all of the trips. “The first time I sat in a sea kayak was with Wilderness Inquiry on a trip to the Apostle Islands. It changed my life. I not only learned about kayaking, but about cooperation and pushing oneself beyond one’s boundaries. I came home from the trip, immediately bought my own kayak and helped organize the Inland Sea Kayakers, a twin cities-based kayaking club,” said Jody Russell, past President of the Inland Sea Kayakers.

Canoe Trips With Jim Fitzpatrick While floating in a canoe in the swamps of Arkansas last year, Minnesota naturalist Jim Fitzpatrick saw a bird thought to be extinct for over 50 years—the fabled Ivory Billed Woodpecker. Fitzpatrick was helping his brother, John, who happens to be an ornithologist working for Cornell University. Together, they caught the world’s attention when they saw what the locals used to call “the Lord God Bird”.

Fitzpatrick will be leading several canoe trips this year with Wilderness Inquiry. “Sharing the outdoors with everyone is my passion” says Fitzpatrick. “What I really like about Wilderness Inquiry is that they really do make the wilderness accessible to everyone, including people who use wheelchairs, people who are blind, and just about everyone under the sun”.

In August, Fitzpatrick will lead a trip on the remote Big Salmon River, Yukon Territory, This trip begins on pristine Quiet Lake, high in the Yukon’s Big Salmon Mountains. Along the way, paddlers will see the remains of several cabins and old mining sites—places where people dreamed of striking it rich in the Klondike Gold Rush of ’98. The trip will coincide with the annual migration of big red Chinook salmon, as they travel up steam on their way from the Bering Sea to spawn in mountain-rimmed alpine lakes.

In October, Fitzpatrick will lead two canoe trips on the Rio Grand River of Texas. Located in Big Bend National Park. these trips will pass through the Mariscal and Boquillas canyons. With sheer rock cliffs that rise 1400 feet above the water, these canyons provide some of the most spectacular outdoor scenery in North America. Participants will also explore slot canyons, witness the desert southwest in full bloom, soak in natural hot springs and experience desert solitude.

These trips are all part of a series of adventures Wilderness Inquiry leads in the Americas, Australia and Africa. Wilderness Inquiry specializes in providing appropriate staff support and adapted equipment so people who need physical assistance can fully participate. Trip fees vary depending on the trip, and include meals, equipment, gear, trip planning, permits and staff. For rates, more information or to sign up for a trip, visit www.wildernessinquiry.org or call 800-728-0719.

Volunteer Opportunity: Frequent Filer (Office Assistant) Duties: provide supplementary and auxiliary clerical services to agency staff. Being a Frequent Filer might not be as glamorous as being a frequent flier, but this type of volunteer service is invaluable to this large social service agency. Volunteers must be at least 16 years of age. Contact Ramsey County Community Human Services—Volunteer Services at 651266-4090 for additional information, or send e-mail to volunteerservices@co.ramsey.mn.us.

Candidate Forum for Secretary of State

New fair housing Web Site

The Minnesota Disability Law Center, Courage Center, Merrick, Inc., and ARC Twin Cities are co-sponsoring a candidate forum for office of Secretary of State on July 21, 2006 from 11:00 a.m.-12:30 p.m. at the Paul and Sheila Wellstone Center for Community Building in St. Paul. The purpose of this forum is to provide an opportunity for individuals with disabilities to connect with the candidates regarding voting and election issues. Refreshments will be provided. ASL interpreters provided.

Do you think you’ve been treated unfairly or been discriminated against in renting or buying housing? The federal Fair Housing Act prohibits housing discrimination on the basis of race, color, religion, sex, disability, familial status and national origin in renting or selling private or public housing.

To encourage residents’ awareness and support of the law, Hennepin County has a new Fair Housing section on the county website (www.hennepin.us). The site, created by the Hennepin Housing, Community Works and Transit Department, proThe event is free and open to the public. If you would like more vides facts and resources about fair housing practices and information, please call Mai Thor at 612-746-3799 or send housing discrimination. email to mthor@midmnlegal.org.

Included on the site are information on fair housing laws and Social Security Web Site Provides Help And enforcement, legal resources, examples of housing discriminaAnswers tion, home ownership rights, tenant resources, links to housing Social Security’s website—www.socialsecurity.gov—has a and human rights organizations, and information on how to file variety of online services that allow people to access informa- a fair housing complaint. There currently are more than 200 fair tion and conduct business with Social Security from the conve- housing complaints on file with the Housing Discrimination nience of their computers at any time. Medicare beneficiaries Law Project, a collaborative between Mid-Minnesota Legal with limited income and limited resources who need assistance Assistance and Southern Minnesota Regional Legal Services paying for their Medicare prescription drug costs can go to that covers the metropolitan area. www.socialsecurity.gov/prescriptionhelp to apply online for extra help. People also can apply online for Social Security The site also includes information on building inclusive comretirement, spouse’s and disability benefits at www.social munities, advancing fair housing, multi-language resources (including home ownership rights in Hmong, Russian, Somali security.gov/applytoretire . and Spanish), and links to information on various ethnic In addition, Social Security offers online benefits planners at cultures and backgrounds. www.socialsecurity.gov/planners . The planner’s three online calculators also allow individuals to compute estimates of their Find a Park in Hennepin County online! future retirement benefits and current disability and survivors Spring is sprung, the grass is riz—wonder where the closest benefits. park is?! Hennepin County has a new park locator feature on the county Web site, www.hennepin.us. Some 928 parks can be Fassett-Carmen Returns to Remembering located on the site, which includes state, Three Rivers (Hennepin With Dignity County), city and Minnesota Valley parks. Once you find the Advocating Change Together (ACT) has brought Jim Fassett- map of a park, you can get an even more accurate view by Carmen back as lead organizer for Remembering With Dignity clicking on “aerial photo” to see such details as surrounding coalition (RWD). Fassett-Carmen and members of the RWD streets, parking lots, and the lay of the land around the park. committee will be developing a time line for the continued restoration work on the Rochester state hospital cemetery, the ”This interactive site is yet another service we are now able to St. Peter treatment center cemetery and the Hastings state provide on the Hennepin County website,” says Commissioner hospital cemetery over the next 15 months.

Randy Johnson, chair of the Hennepin County Board and a long-time proponent of the latest in technology for county Fassett-Carmen had been with ACT/RWD for 7 years prior to services. “The park locator is just the beginning. We are being laid-off last August. The funds for the continuation of this planning a ‘Hennepin Mapped’ section of the website on which project come from a legislative grant in the bonding bill of ’05 visitors will be able to locate the nearest service center, library through the Department of Human Services. and recycling center, as well as highway construction information and other county services.”

RWD is the effort by ACT and other disability organizations to: 1) Bring more public awareness of persons with developmental Disability/Religion Resources/Online Community disabilities. 2) Keep the history of persons that were institution- Faith communities generally strive to be welcome to anyone alized in Minnesota. 3) Seek an apology from the state of who has a desire to participate. Unfortunately some religious Minnesota for the treatment of individuals while they were groups proclaim “Welcome Everyone” while unknowingly institutionalized. 4) Replace anonymous numbered markers at excluding persons with disabilities. Barriers to participating the former state hospital cemeteries with granite headstones can be both physical and attitudinal. Fortunately there are that show the person’s name, birth date and death date. organizations that are striving to increase awareness of the unique contributions and needs that persons with disabilities RWD is one of many projects at ACT. ACT also offers a bring to their church, mosque or synagogue. Faith Ability leadership development program called Common Vision, as www.faithability.org offers an opportunity for people with an well as an earned income venture called Tools for Change, interest in religion and disability issues to discuss resources and through which they distribute products that are mission-driven solutions, and seeks to compile those resources into one locaand multi-media. tion. At the Faith Ability Web site you will find a directory of religious disability programs, a news section and a bulletin board. Please stop by to see some of the great resources that exist in this area and share your own life experiences that may be helpful to others. ■

June 10, 2006

Square Dancers Wanted Summer 2006 Perfect Squares is recruiting adult wheelchair users for square dancing. The Perfect Squares will perform in summer parades. No experience?

We’ll teach you. Participants must be able to push their own manual wheelchairs or control their power wheelchairs safely!

The Perfect Squares meet on the 1st and 3rd Mondays: May 1st, 15th, June 5th, 19th, July 3rd, 17th from 6:30 p.m.- 8:30 p.m. at 3030 E. 53rd St., Mpls. Be sure to confirm that dance practice is planned as scheduled on the dates listed above. Join us.

Learn something new, make new friends and have some fun. For more information, call Sheila Nelson at 612-3794721 or email Jan Snook at jsnook1234@yahoo.com Somali/African American Women Dialogue Groups June 17, 2006 The third dialogue group in this series, entitled, “Our Voices, Our Stories, Our Wisdom,” will meet June 17, 2006 from 1p.m.-3p.m. at Augsburg College, Mpls at the East Commons in the Christensen Center. Lunch is free.

Somali and African American women began meeting in dialogue groups on January 28, 2006. The series is organized

Upcoming Events by the Inter-Race Institute and to L.E.A.D. (Leadership, Education and Development), which are both well known for their education efforts on diversity and African immigrant assistance, and supported by the Woman’s Foundation and the Otto Bremer Foundation.

To sign up for the dialogue groups and reserve a lunch, call the Inter-Race office at 612-339-0820 by Wednesday, June 14, 2006.

Secretary of State Candidate Forum July 21, 2006 The MN Disability Law Center, Courage Center, Merrick, Inc., and ARC Twin Cities are co-sponsoring a candidate forum for Sec. of State, July 21, 2006. The forum is scheduled from 11:00 a.m.-12:30 p.m. at the Paul and Sheila Wellstone Center for Community Building in St. Paul. The purpose of this forum is to provide an opportunity for individuals with disabilities to discuss voting and election issues with the Secretary of State candidates. Refreshments served. ASL interpreters provided. The event is free and open to the public. For more info, please contact Mai Thor at 612-746-3799 or mthor @midmnlegal.org

ADA Celebration: 16 Years Later; What Do Recent Supreme Court Decisions Mean for the ADA Today?

July 26, 2006 In honor of the 16th anniversary of the signing of the Americans with Disabilities Act (ADA), several local disability organizations are sponsoring an evening celebration, Wednesday, July 26 from 6:30 p.m.-9:30 p.m. at the Radisson University Hotel, 615 Washington Ave. SE, Minneapolis.

Medicaid Town Hall @arcgreatertwincities.org Meetings Distr.4—Loc: State Office August 2006 Building, 100 Martin Luther Come and learn what you can King Blvd, St. Paul; Room do to ensure Minnesota- 10; Date: Mon., Aug 15; elected officials know about Hosted by Advocating the importance of the Medic- Change Together. Contact aid program for persons with Rick Cardenas: act@self disabilities. Key experts will advocacy.org, 651-641-0297 describe how the Federal Defi- Distr. 5—Loc: Brookdale Licit Reduction Act of 2005 brary; 6125 Shingle Creek could negatively affect the ser- Pkwy; Brooklyn Park; Date: vices provided to persons with Wed., Aug 17; Hosted by disabilities and their families. Metropolitan Center for InThere are still many actions dependent Living (MCIL). that people who support ser- Contact Mike Chevrette: The keynote speaker, Barry vices for persons with disabili- mikec@mcil-mn.org, 651Taylor, will discuss current ties can take to diminish these 603-2005; TTY 651-603-2001 Supreme Court decisions and funding-reduction threats.

Distr. 6—Loc: Courage St. the state of the ADA today.

Croix, 1460 Curve Crest Taylor is legal advocacy di- Meeting schedule and regis- Blvd, St. Croix; Date: Wed., rector for Equip for Equality, tration contact information: Aug 9; Hosted by Courage Inc., the Illinois Protection and Advocacy system. In his work, Congressional Distr. 1–TBA he supervises legal services, Distr. 2—Loc: Dakota County self-advocacy and training pro- N. Service Center, 1 Mendota grams. Taylor has overseen Rd W, West St. Paul; Date: many individual and systemic Tuesday, August 8; Hosted disability discrimination cases. by Brain Injury Association here was a lot of in The evening features entertain- of MN. Contact Jeff Nachbar: terest in the U.S. Senment by locally-known per- jeffn@braininjurymn.org, ate debate over The former, Kevin Kling and jazz 612-378-2742 pianist, Michael Deutsch. Distr. 3—Loc: Bloomington Health and Insurance MarketCash bar available. Light re- City Hall; 1800 W. Old Shak- place Modernization Act (Senfreshments served. Admission opee Road, Bloomington; ate 1955). (See last month’s free. Contact Betty at 651-646- Date: Wed., Aug 2; Hosted article “Congress Debates Cuts 8342, TTY 551-602-2001or by Arc Greater Twin Cities. to Vital Health Care Benefits” bettyc@mcil-mn.org to re- Contact: Gene Martinez, 952- by John Tschida.) Since the serve your spot. For more info, 915-3615; Register, call 952- bill did not get the 60 votes visit www.ada minnesota.org 920-0855 or email register needed to stop a Democratic

Smith is one of a handful of national experts in the field of benefits planning, assistance and outreach. She co-chairs the SSA Chicago Regional Commissioner’s Work Incentives Advisory Group (WIAG), which includes advocates and SSA employees from all six states in the Chicago Region. WIAG’s goal is twofold—to provide the Regional Commissioner effective and timely guidance on how best to administer SSA’s employment support provisions, and to provide real solutions to real problems for people with disabilities who want to work. The groups other

Center. Contact Kristin Hansen: kristin.hansen@ courage.org, 763-520-0439 Distr. 7—Loc #1: Marshall Adult Community; 107 S. 4th St, Marshall; Date: Mon, Aug 15; Hosted by The Arc of MN. Contact Pat Mellenthin: mellenjp@mvtvwireless. com, 507-532-2220 Distr. 7—Loc #2—Crookston Public Library, 110 No. Ash; Date: July 25; Hosted by Options Center for Independent Living. Contact: John Johnson, 1-800-726-3692.

Distr. 8—Loc: Duluth City Council Chambers; 411 West 1st St, Duluth; Date: Thur., July 27; Hosted by MN HomeCare Association. Contact Jeff Bangsberg: jbangs berg@mnhomecare.org, 763-438-5805 ■

Modernization Act Fails To Clear

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AWARD - Cont. from p. 1 Smith is currently leading the Minnesota Work Incentives Connection’s move from state government to nonprofit status, so that it can remain a long-term resource for Minnesotans with disabilities.

“Barb is most deserving of this prestigious award because she has demonstrated outstanding leadership.,” said Rehabilitation Services Director Kim Peck. “She has been successful in building the continuum of benefits planning services for Minnesotans with disabilities that are provided by the Work Incentives Connection.”

To list an event, email access@accesspress.org

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Minnesota representatives, Barbara J. Kuhn, Anne Lewandowski, Lolly Lijewski, John Schatzlein and Joani Werner, all had high praise for Smith. Schatzlein’s comments were typical, “Barb Smith certainly has been a tireless advocate to the SSA DEWIT advisory committee and has been a major influenecial force representing Minnesota’s persons with disabilities who desire to achieve better return-to-work options and incentives.” ■ Anita Boucher is the evaluation and grants director of the Minnesota Work Incentive Connection.

filibuster, it’s likely dead for the year.

Although the Chamber of Commerce and others are pushing hard for the Republican leadership to bring the bill up again this year, the crowded congressional schedule and pending election make that prospect unlikely. ■

June 10, 2006

8

Living Independently

Finding A “House Call� A Fall From The Sky Plane Crash Leads Local Man to Successful In The Twin Cities Career as Innovator/entrepreneur

by Lisa Schmidtke

Mark Felling

A

ids for daily living, Resource Contact Information adaptive equipment, Housecalls Network: 952-221-0722; assistive medical www.housecalls-network.com devices‌three terms used to describe things that help you 1-800-Wheelchair: 800-320-7140; www.1800wheelchair.com/index.asp put your socks on & pick up All Lift Chairs: 800-285-2584; www.all-lift-chairs.com stuff that you drop. But it goes Alzheimers-Disabilities-Plaza; far beyond that. Products such www.alzheimers-disabilities-plaza.com as adaptive utensils, nosey Body Cooler: 800-209-2665; www.bodycooler.com cups and glossectomy spoons Cause I Care Gifts & Gift Baskets; www.causeicare.com help prevent dehydration and Clever Products: 888-253-8378; www.ez-doesit.net malnutrition. Long-handled Colored Plastics Canes; www.coloredplastics.com bathing sponges and self-wipDrink Aide: 800-336-7022; www.drink-aide.com ing aids ward off infections Equal Access Homes: 651-450-6292 due to improper grooming.

Good Grips: www.goodgrips.com Gait belts and transfer boards help caregivers transfer their LCSI: www.lcsilifts.com patients without straining their Maddak: 973-628-7600; http://service.maddak.com backs. Finding the right solu- Merwin: www.robindrug.com tion to a daily living issue just Target: www.target.com may help a person stay in their home a little longer. a complete set of eating uten- tion companies that specifisils with their built up, com- cally focus on adaptive remodThe first room in the home to fortable grips. In the bedroom, eling. Widening doorways, become “adaptive� is often the bed rails and rope ladders pre- lowering countertops and inbathroom. Grab bars, raised vent falls. Necessities can be stalling durable flooring and toilet seats, shower chairs and kept close by attaching a roll-in showers are big jobs transfer boards cover the key bedrail organizer, bedside bev- that companies such as Equal areas where a person could erage holder or a bookstand. Access Homes can handle. fall or get hurt. Items that help These handy items are a good LCSI installs lift and transfer in the kitchen include Dycem start to maintaining indepen- equipment in homes, care fato keep bowls and plates from dence, but sometimes they cilities and hospitals. Spendslipping, jar openers and knob aren’t enough. The Twin Cit- ing time and money on making turners. Good GripsŽ created ies is lucky to have construc- a home accessible can prevent injuries and protect your home investment.

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A picture is worth‌

Many aids for daily living were created by people who were looking for a creative solution. The residents and staff of Inglis House, a long-term care facility in Pennsylvania, were so concerned with people with physical disabilities not getting enough water that they developed a revolutionary water bottle called Drink-Aide.

Drink-Aide is assembled, packaged, tested and distributed by Inglis House residents who work in the vocational rehabilitation program. The Maddak Awards Program was started to provide a forum for occupational therapists and students to share their ideas Independent - cont. on p. 15

S

lightly less than three years ago, Twin Cities native Mark Felling dropped off a package at the post office on his way to work.

It would be the last thing he remembered that month.

back on the runway. Rather one must continue straight forward and try to pick the best possible location to crash land the airplane.

After leaving work late, Felling stopped off at Flying Cloud Airport in Eden Prairie, Minnesota to practice a few takeoffs and landings. He was preparing for a Fourth of July flight to visit family in Central Minnesota.

more forgiving to a fixed-gear aircraft than water, which offers either certain death from impact or drowning. Felling glided along the slope of the hill while trying to restart the engine. He radioed the control tower that he was going down with little time to say much

Ahead was a long hill sloping down to the Minnesota River, His memories began to return surrounded by trees and in late July after getting trans- marshes. Gliding at about 70 ferred out of ICU at Hennepin mph, tree branches are much County Medical Center. At that time he learned he could not move anything but his head because he had completely crushed his neck at the C5 level. He could barely talk due to pneumonia caused by a ventilator that was assisting his breathing. During the following weeks he slowly pieced together what happened.

Felling’s airplane after the crash near Shakopee, MN.

Felling’s first flight in his Dragonfly, two-seat, airplane After filling up with fuel, Felling took off and landed once before deciding to go around just one more time as the sun glowed full on the horizon.

Following takeoff from the southbound runway his engine stalled for undeterminable reasons at the worst possible time—just as he was leaving the end of the runway, crossing 50 to 200 feet above Highway 212. Training dictates that with less than 500 feet of altitude there is not enough to turn around and land

else. He turned 90° to avoid the river and apparently tried to put the small plane down in a plowed field. Instead, he ended up in the trees 50 feet short of the field.

A close friend who visited the crash site informed Felling that he was either very skillful or very lucky and had flown right between two large trees. He got the plane within 40 feet of the ground before his wing hit a large branch, stopping the airplane in midair. However,

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momentum caused the airplane to flip up-side-down, pivot around the wing and drop 40 feet to impact the ground. With only one inch of clearance over his head in the Plexiglas cockpit, even a full four-point harness could not prevent Felling’s head from getting smashed into his shoulders.

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It took rescuers 45 minutes with a helicopter equipped with infrared sensors to locate Felling just across the river from Valley Fair. They found him conscious but fading, with aircraft fuel trickling down the back of his legs. He informed them he was very numb and could not move his legs or arms. As a former lifeguard Felling feels he likely suspected his spinal cord was damaged at that time. It took more rescuers and another 45 minutes to extract Felling from the upside down aircraft and airlift him away.

Soon after recovering his memory, Felling began reinventing his life—with a pasCrash - cont. on p. 12

Testing the Comfort Carrier

June 10, 2006

Home Access Answers

Local Athlete Named All-Tournament Basketball Player

Bigger Doesn’t Always Mean Better

by Jane Hampton, CID, Access Specialist Dear Jane, I live alone in a small townhouse. I have multiple sclerosis, and there are good days and bad days. There are days when I am very fatigued and do not have a lot of strength to reach items in my upper wall cabinets or at the back of shelves in base cabinets. There isn’t any room to enlarge the kitchen. Do you have any suggestions on modifying my kitchen so I can continue to prepare my meals, even on my difficult days?

Jean R., Duluth, MN Dear Jean, We have often been challenged to solve a problem similar to yours. There are several scenarios where it is not architecturally possible to enlarge the kitchen to provide additional storage within an individual’s accessible reach range. When looking at a standard kitchen, a significant amount of storage is “out-of-reach.�

There are some unique products available for organization that works well for individuals with limited reach ranges. Individuals who have small areas need great organization products to convert a small “inefficient� kitchen into a small “functional� kitchen.

As a start, base cabinet shelving can be removed and replaced with pull-out shelves, bringing the back of a shelf to the front. Pull-out shelves can be solid or wire “basket� style and easily available.

9

A

thlete Ben Kenyon was named to the All Tournament Team at the 2006 National Wheelchair Basketball Tournament in March in Houston, Texas. This honor identifies Kenyon as one of the top wheelchair basketball players in the country for the Junior division. The 15year-old Minnetonka High School student says that being named to the team was his “proudest moment.�

Jeanne Angel, of Plymouth, MN, in her redesigned kitchen. can roll out of the cabinetry.

This is especially functional in small kitchens where there isn’t adequate width to install a traditional pantry cabinet.

If you are unable to reach items on the upper shelves in your wall cabinets, you may want to consider installing a pull-down shelving system, which can bring items from the top shelves down closer to countertop level. This hinged shelving system is mounted in upper wall cabinets in place of fixed or adjustable shelving.

As with corner base cabinets, lazy-susans can also be installed in upper corner wall cabinets bringing items stored at the back corner towards the front opening. If you have difficulty lifting and moving small appliances such as a mixer, food processor, etc., an “appliance lift� shelf can be installed in base cabinets. The appliance is placed on the shelf and stored in a base cabinet.

When used, the shelf is easily pulled out of the cabinet and rises to counter height with very little effort.

We have recently seen upper wall cabinets and base cabinets where the entire shelving system pulls out from the wall allowing access from the side of the shelves. Some manu- Oftentimes in a small kitchen, factures also offer full height countertops are used to store a pantry shelving that can be as toaster, coffee maker, mixer, tall as 80� above the floor, with a width of 9� to 20� that

etc., leaving little counter space to use as a work area. Pull-out bread boards can be added in a kitchen to provide additional work surfaces. Some individuals who tire easily will use a chair on casters to sit in while preparing meals. Use of a bread board as a work surface provides knee clearance below to accommodate use of a chair without loosing valuable storage space in base cabinets.

Placement of bread boards also provides convenient counter space when positioned adjacent to an oven, microwave, refrigerator or cooktop.

Kenyon’s involvement in athletics does not stop at basketball. He also participates in track, soccer, tennis and more.

As a wheelchair track athlete, Kenyon is a regular at local 5K and 10K events, including the 2005 Dave Huffman Memorial 5K and the annual Firecracker 10K Run. He is a fivetime participant and three-time winner of the Race for the Cure.

Kenyon is also a competitive swimmer winning at the National Junior Disability Championships from 1999 to this current year.

He was named center for the PI Division All-Tournament Team in the 2005 State Adapted Soccer Tournament sponsored by the Minnesota High School League. Kenyon most recently participated in a demonstration event sponsored by the United States Tennis Association (USTA) at Mall of America.

In some kitchen situations, we have installed two bread boards, one on top of the other, with the lower board having a hole cut out of it the size of a commonly used mixing bowl.

After the top board is used for cutting and chopping, the food “Ben is happiest when he’s items can be pushed from the participating in some sort of Home - cont. on p. 15

Minnetonka’s Ben Kenyon shows off his tennis backhand.

Kenyon was recently honored at the National Wheelchair Basketball Tournament in Houston, TX. competitive sport,� says his mother, Darla Kenyon. “And, if it includes a ball, all the better!�

The Minnesota Junior Rolling Timberwolves basketball team was started in 1993. Sponsored

by Courage Center, the team is a perennial Final Four participant. It was ranked third in the nation in 2005 and fourth in 2006.

“I remember the first day I saw [Ben] peeking into the gym during junior basketball practice,â€? says Sharon Van Winkel, Courage Center’s director of Sports & Recreation. “From that day, he wanted to try every sport – and he excels at every sport he tries. His ‘can do’ attitude makes him a role model to many people. Ben is a serious athlete.â€? â–

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June 10, 2006

10

Urur u adeega Qaxootiga Local Nonprofit Serves naafada ah ee wadanka Immigrants With Disabilities dagan:

by Abdul Gulan

by Abdul Gulan

T

obankii sano ee la soo dhaafay, labada magaalo ee mataanaha ah (Twin Cities) waxay noqotay caasimada jaaliyada Soomaaliyeed ee waqooyiga Mareykanka. Minnesota waxay guri u tahay ugu badnaan Soomaalida dagan waqooyiga Mareykanka, ayagoo dadkaasi badidood ay dagan yihiin magaalooyinka Minneapolis iyo St. Paul. Ugu yaraan todobaatan kun (70,000) oo qaxooti Soomaaliya ka yimid ayaa dagan gobolkan Minnesota.

Labaatan kun (20,000) oo dadkaas ka mid ahna waxay yimaadeen wadankan ayagoo naafo ah. Dadkaas waxay badidood ka yimaadeen xeryo qaxooti oo Mareykanka ka baxsan ama gobolada kale ee

ka tirsan U.S. oy ku soo doorteen gobolkan shaqooyinka badan ee laga helo iyo hayadaha qaxootiga caawiya.

Ururka Qaxootiga Naafada ama (DIA) waxaa sameeyey dad Soomaali ah sanadkii 2003.Ururkan oo ku shaqeeya si bilaash ah (nonprofit) waxaa hogaamiya dad naafo ah oo u istaagay sidii ay u caawin lahaayeen walaalahooda naafada ah ee wadankan dagan.

DIA waxay ka caawisaa qaxootiga naafada ah sidii ay isku filaansho uga gaari lahaayeen xag walba ee noloshooda qaabilsan.

Dagaalkaas oo weli ka socdo Soomaaliya wuxuu sababay in la waayo dowlad wax u qabata shacbiga Soomaliyeed ee u baahnaa in laga caawiyo xagga waxbarashada, caafimaadka, amaanka, iyo dhaqaalahaba.

Saddex arimood ayaa badi sababtay naafada Soomaaliyeed: Kuwo ku dhashay xubnahooda oo dhiman, sida indha laâ&#x20AC;&#x2122;aanta, ama dhago laâ&#x20AC;&#x2122;aanta iyo kuwo ay xubnahoodu ku lumen dagaalkii sokeeye dartiis. Qaar kaloo badan ayaa dagaalkii sokeeye oo dheeraday dartiis, Qaxootiga Soomaliya ka yimid maskaxda wax ka gaareen, sida waxay ku soo qulqulayeen niyad jab, murugo, iyo walaac gobolkan ilaa uu bilowday joogto ah.

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DIA waxaa mar dhow la siiyay sharciga loo yaqaan 501(C) 3 oo u sahlaya sidii ay u caawin lahaayeen dadkooda naafada ah.

Dadkaas qaxootiga ah waxay u yimaadaan wadankan iney bilaabaan nolol fiican oo aysan xadidin naafanimada.

Naafanimadu waxay marar badan ku keentaa dadka qaxootiga ay inay lumiyaan isku kalsoonidoodii ama ay ka shakiyaan wax qabadkooda. â&#x2013; DIA (Disabled Immigrant Association) waxaad kala xiriiri kartaan taleefanka 612-8247075 ama cinwaanka DI_ASSO@YAHOO.COM.

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n the last decade, the Twin Cities has become the de facto â&#x20AC;&#x153;capitalâ&#x20AC;? of the Somali community in North America. Minnesota is home to the largest Somali population in the United States, nearly all of which are located in the Minneapolis-St. Paul area.

There are 70,000 immigrants from Somalia living in the state, and 20,000 of these people arrive with a disability.

These Somalis have come either directly from refugee camps, or as secondary migrants from other countries and U.S. cities, drawn here by the urban job market and the refugee service agencies.

The Disabled Immigrants Association (DIA) was formed by immigrants from Somalia in 2003. The voluntary, human services organization is led by immigrants with disabilities who are striving to help other immigrants with disabilities (from all countries) adjust to their new opportuni-

â&#x20AC;&#x153;There are 70,000 immigrants from Somalia living in the state, and 20,000 of these people arrive with a disability.â&#x20AC;? ties in the United States. DIA supports immigrants and their careers by providing a multitude of services, information and advocacy on key issues.

The immigrants DIA serves which arrive in this country burdened with a variety of physical and/or mental disabilities. These disabilities often cause the immigrants to have low self-esteem that cripples their ability to succeed in their new homeland.

DIA helps by teaching them how to move away from low self-esteem and dependence towards self sufficiency and increased self-confidence.

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Somali refugees have been settling in the Twin Cities since Somaliaâ&#x20AC;&#x2122;s civil war erupted in 1991. In the aftermath of the civil war, there has been no central government, which

for help from other more experienced non-profit organizations.

The situation in Somalia has been dire for some years now.

Hundreds of thousands of â&#x20AC;&#x153;These disabilities often people in southern Somalia are at risk of starvation due to cause the immigrants to drought and economic turmoil. a have low self-esteem Only one-fifth of children aged that cripples their ability 6 to 13 are in school, with even to succeed in their new fewer attending secondary school. The region suffers from homeland.â&#x20AC;? a high incidence of malaria, tuberculosis, and H.I.V. virus. means there are no functional Many people do not underinstitutions to provide assis- stand the nature of these distance. There has been no orga- eases and their transmission. nized police, no education, little healthcare, a lack of clean water and many other major â&#x20AC;&#x153;Hundreds of thousands problems. These governmen- of people in southern tal shortcomings have both led Somalia are at risk of to or exacerbated peopleâ&#x20AC;&#x2122;s dis- starvation.â&#x20AC;? abilities.

Many Somalis have disabilities that are a result of either a birth defect or the civil war.

Some people have physical disabilities, including amputees, those born without limbs, the blind, and the deaf. Others have cognitive disabilities, including treatable emotional ailments such as depression and culture shock. Furthermore, there are many war disabilities that are not the result of military service. These disabilities occur from being in a refugee camp or from just being an innocent bystander in the wrong place, at the wrong time.

Lastly, the regionâ&#x20AC;&#x2122;s main form of income, its livestock trade, has been decimated by the outbreak of two deadly viruses (Rift Valley Fever Virus and the Rinderpest Virus) and the subsequent bans placed on their livestock by the regionâ&#x20AC;&#x2122;s trading partners. Many Somalis lack the knowledge and the equipment to take the necessary steps to overcome the bans, regulate the trade in livestock and be able to compete in the marketplace. In light of the disease, lack of educational opportunity, and economic turmoil, many of the disabled Somali immigrants have never When the need for more ser- had the resources or opportuvices in the Twin Cities in- nity to seek help with their creased, DIA responded by disabilities.

â&#x20AC;&#x153;These disabilities occur from being in a refugee camp or from just being an innocent bystander in the wrong place, at the wrong time.â&#x20AC;?

These immigrants arrive in this country seeking a new life while trying to deal with physical and/or cognitive disabilities. These disabilities often cause these immigrants to have low self-esteem and cripple their ability to succeed in their opening an office in Minne- new homeland. apolis in 2003. The organization acts as a resource center. The Disabled Immigrant AsIt also manages a range of ser- sociation can be contacted at vices to support its mission. 612-824-7075, or through DIA, which recently received email at DI_ASSO@yahoo. its 501(c) 3 status, is looking com. â&#x2013;

June 10, 2006

11

Commentary

Rating George W. Bushâ&#x20AC;&#x2122;s Presidency

by Jeff Nygaard and Billy Golfus With the low approval ratings President Bush has had recently, Access Press thought it would be interesting to poll a few regular readers/contributors for their review of the Bush presidency. To that end, AP sent out a request to ten people, evenly spread across the political spectrum, asking for their views. After several reminders and prods, we print here the only responses weâ&#x20AC;&#x2122;ve received so far.

Bush Presidency a Disaster

by Jeff Nygaard think the Bush presidency has had a negative effect on the lives of most people with disabilities. There are two basic reasons I say this, one a general reason, and the other

I

specific. The general reason is that the Bush administrationâ&#x20AC;&#x2122;s general preference for â&#x20AC;&#x153;marketâ&#x20AC;? solutions to various problems has a bias in favor of people with more resources.

That is, in a market setting, the people who have more moneyâ&#x20AC;&#x201D;and thus more ability to purchase products and servicesâ&#x20AC;&#x201D;tend to thrive, while those of us with lower incomes and levels of wealth come out on the short end. Since such high numbers of people with disabilities also have limited incomes, this orientation reduces access to many things for people with disabilities. In terms of health care, the higher costs involved in support and care for people with serious or chronic conditions make this

population unattractive to â&#x20AC;&#x153;the system of private investment.

All in all, this administration market.â&#x20AC;? has been a disaster for people Specifically, there are a num- with disabilities. â&#x2013; ber of policy proposals made by the Bush administrationâ&#x20AC;&#x201D; Jeff Nygaard worked at Acin the areas of health care, hous- cess Press from 1994 to 2002, ing, education, and employ- serving as editor during the mentâ&#x20AC;&#x201D;that would have seri- year 2001. He now works as a ous negative consequences for writer, focusing on media and people with disabilities. With- social policy. Nygaard says out going into details, I must that he has no political party mention proposed cuts in the affiliation, and did not vote Section 811 housing programs, for President Bush. cuts in vocational education Worst President funding, a failure to fully fund in My Lifetime IDEA, cuts in Medicaid and

By Billy Golfus Medicare, elimination of TBI, merica is relentless in the epilepsy, and hearing programs, way it ignores gimps. and the very dangerous idea of moving the Social Security program away from a system of George Bush may be the worst social insurance and toward a president in my lifetime. Cer-

A

Commentary

Is It Time For Social Security Reform?

by Michael Cohn, M.Ed.

M

ost people who try to get a social se curity case handled are aware that it can take anywhere from two to three years before receiving their first check. This is something that I know firsthand. I feel it is time for our federal officials to step up to the plate and demand that the people who are in charge of the Social Security claims make changes in how they manage the system that they serve.

Many people who rely on SSI, SSDI or Social Security have had to wait years until their benefits kick in. How would the federal officials like it if they were told that they could not get their paychecks for anywhere from one to three years? How could they live from month to month without having money coming in?

For many people who live with a disability, having to deal with this system of government is time consuming and frustrating.

Why so time consuming? One answer that I have been given time and time again is that there is a backlog of cases.

Why frustrating? There are many hoops we are told we must jump through to get money from the system. Hoop One: file for the program that you fit in. Hoop Two: prove that you have a case. Hoop Three: get denied. Hoop Four: file an appeal. This process itself can take one to two years.

Hoop Five: wait for the appeal to be approved, after which you have a court hearing. After the court date you have to wait two more months to hear back regarding the judgeâ&#x20AC;&#x2122;s decision. Finally, when the

judge rules in your favor, you must wait four to six more months before you get your first check. Wouldnâ&#x20AC;&#x2122;t you be frustrated?

help. Within 24 hours, his staff was able to get me answers that I have been unable to get after four months of dealing with the Social Security folks.

One of the answers was an The truth of the matter is, we answer I had been looking for; need, no we demand Social the other answer was one I did Security reform NOW! And, not want to hear. not the kind of changes President Bush is suggesting, like Getting this issue resolved will privatizing. What we need is take more timeâ&#x20AC;&#x201D;and one more streamlining. Why should any appeal. When I filed for a secperson have to go through de- ond claim, I was told that 95% lays in getting money that they of all initial applications are have earned? denied and then have to be appealed. The question is We need to cut out the number â&#x20AC;&#x153;Why?â&#x20AC;? Why so many deniof steps a person must take to get assistance for their daily living expenses.

als? And how many people end up dropping their cases because they are afraid of the appeal process and may not understand that they are denied the first time for no solid reason?

We need to reform this messed up system. If you have any interest in seeing Social Security reform started in Minnesota, please contact me and letâ&#x20AC;&#x2122;s see what we can accomplish. â&#x2013;

been expensive to his business friends. We are at the low point in American historyâ&#x20AC;&#x201D;â&#x20AC;&#x201D;the low pointâ&#x20AC;&#x201D;â&#x20AC;&#x201D; and it is an open question if America will survive. Manufacturing and technical work is outsourced to other countries leaving behind only do-gooder jobs, a situation which is bad for the gimps and bad for America. As W C Fields said, â&#x20AC;&#x153;Everybodyâ&#x20AC;&#x2122;s got to believe in something, and I believe Iâ&#x20AC;&#x2122;ll have another drink.â&#x20AC;? â&#x2013;

What I donâ&#x20AC;&#x2122;t like about Bushâ&#x20AC;&#x2122;s presidency is that he favors the rich, that he has made America a hated country, that he has no regard for human life or freedom, that he uses torture which has not been an American value until this administration, that he postures in costumes and that he lies.

Other than that he is a presi- About himself, Golfus writes: dent lacking in even average Iâ&#x20AC;&#x2122;m trying to write and make movies about the way disabled intelligence and education. folks are excluded or I donâ&#x20AC;&#x2122;t like the Democrats or kept invisible. I have a non the Republicans, since they profit organization, the Naseem to be very similar. Nei- tional Disability Awareness ther party has a real regard for Project which is not making a the values we say we stand for: profit nor has any funding. peace, freedom, individuality Iâ&#x20AC;&#x2122;ve been around the block. and tie dye. Bush has cut pro- Most of my disabled friends grams to help people, includ- have gone to the big wheeling basic programs for dis- chair in the sky and I miss abled folks. He has castrated them terribly. I was brain damthe ADA because it might have aged in 1984.

Help give someone a voice!

United Cerebral Palsy of Minnesota 10th Annual Golf Tournament July 17, 2006 Oak Mark Golf Course Oakdale MN

Michael Cohn can be contacted at cohnm@juno.com

For me, Social Security reform requires the following steps: 1. Have more judges and lawyers available to handle the cases. The lawyers must be trained in disability awareness, not just the legal system.

2. Provide for more in-depth studies of the applications in order to prevent all the appeals, which take more time and money from both the legal system and the person applying for benefits.

3. Assign one person from the Social Security office, and one law firm, to each case.

This would eliminate the confusion and duplication of paperwork and phone calls.

Why am I writing this article?

Because for the past three years I have been fighting the system to get money from my fatherâ&#x20AC;&#x2122;s Social Security account after he passed away. I have been patient to a point, but my patience has run thin. I have contacted my congressmanâ&#x20AC;&#x2122;s office for their

tainly he has hurt the disability world, since his way is to rob from the poor and give to the rich. I would rank his presidency as rank.

Individual golf fee is $125 which includes: 18 holes of golf, cart, gift; lunch and dinner and prizes for a hole-in-one.

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12

June 10, 2006

Medicaid Town Hall Meetings August 2006

C

ome and learn what you can do to ensure Minnesota-elected officials know about the importance of the Medicaid program for persons with disabilities. Key experts will describe how the Federal Deficit Reduction Act of 2005 could negatively affect the services provided to persons with disabilities and their families.

There are still many actions that people who support services for persons with disabilities can take to diminish these funding-reduction threats.

Meeting schedule and registration contact information:

by Brain Injury Association of MN. Contact Jeff Nachbar: jeffn@braininjurymn.org, 612-378-2742

Pkwy; Brooklyn Park; Date: Wed., Aug 17; Hosted by Metropolitan Center for Independent Living (MCIL).

Contact Mike Chevrette: mikec@mcil-mn.org, 651603-2005; TTY 651-603-2001

Distr. 3—Loc: Bloomington City Hall; 1800 W. Old Shakopee Road, Bloomington; Date: Wed., Aug 2; Hosted by Distr. 6—Loc: Courage St. Arc Greater Twin Cities. Con- Croix, 1460 Curve Crest tact: Gene Martinez, 952-915- Blvd, St. Croix; Date: Wed., 3615; Register, call 952-920- Aug 9; Hosted by Courage 0855 or email register@arc Center. Contact Kristin greatertwincities.org Hansen: kristin.hansen@ courage.org, 763-520-0439 Distr.4—Loc: State Office Building, 100 Martin Luther Distr. 7—Loc #1: Marshall King Blvd, St. Paul; Room Adult Community; 107 S. 4th 10; Date: Mon., Aug 15; St, Marshall; Date: Mon, Aug Hosted by Advocating 15; Hosted by The Arc of Congressional Distr. 1–TBA Change Together. Contact MN. Contact Pat Mellenthin: Rick Cardenas: act@self mellenjp@mvtvwireless.

Distr. 2—Loc: Dakota County advocacy.org, 651-641-0297 com, 507-532-2220 N. Service Center, 1 Mendota Rd W, West St. Paul; Date: Distr. 5—Loc: Brookdale Li- Distr. 7—Loc #2—Crookston Tuesday, August 8; Hosted brary; 6125 Shingle Creek Public Library, 110 No. Ash;

ANIMALS - Cont. from p. 5 mals like to work, but when the harness is removed, the helper dog knows it is off duty.

These periods of relaxation are necessary for a balance between work and play.

access in public buildings, legislation, how to apply for a guide dog, and helpful tips about how to care for your service animal year round. To learn more about these and other important issues, email Other issues which are con- Kragnes at rebeccak@tcq.net cerns of dog guide user groups or visit her Web site at www. are long- and short-range rebeccak.com. travel, public transportation,

Besides being president of the Minnesota Guide Dog Users (MNGDU), Rebecca Kragnes is also a professional musician. She has a variety of CD’s for sale. To find out how to get any of them, contact Kragnes at the address cited above. ■

Date: July 25; Hosted by Op- Distr. 8—Loc: Duluth City tions Center for Independent Council Chambers; 411 West Living. Contact: John 1st St, Duluth; Date: Thur., Johnson, 1-800-726-3692.

July 27; Hosted by MN

HomeCare Association. Contact Jeff Bangsberg: jbangs berg@mnhomecare.org, 763-438-5805 ■

CRASH - Cont. from p. 8 sion. He was transferred to Sister Kenny Rehabilitation Institute, where during his first few weeks in bed he began designing in his mind what will be the world’s first wheelchair accessible airplane capable of being piloted by anyone who can drive a motor vehicle with hand controls. He resolved that if he would be paralyzed and confined to a wheelchair, he would simply have to design an appropriate airplane if he were to ever fly again. The ongoing project has become known as the “Sky Chairiot,” with others becoming involved such as Steve Craigle, a retired Boeing aerospace engineer.

During the past three years Felling’s life has been going full speed ahead. He has used his engineering background and previous experience teaching quality verification at hightech companies to investigate and test more than 20 wheelchairs. He has completed his Master’s Degree in Business Administration. Along the

way, he has invented and developed five innovative solutions to accessibility problems.

These he recently introduced through his newly formed company, Broadened Horizons, under the brand “Gimp Gear.”

These products are designed specifically for mobility impaired individuals, focusing on wheelchair users with upper extremity limitations in their hands and arms such as quadriplegia, cerebral palsy, muscular dystrophy, multiple sclerosis, and ALS.

some basement water problems he inherited with the home and added a backyard patio. During the same time he had surgery on his left arm to implant a 12 electrode neuroprosthesis into his paralyzed muscles to provide a sort of artificial grasp he describes as “my hand, my muscles, computer-controlled.” He is one of 6 people to have this particular device implanted as part of his ongoing involvement in a research study at The FES Center in Cleveland, Ohio. ■

Felling’s creative energy reaches beyond his company.

He struggled against “the system” for two years to obtain a Levo Combi standing wheelchair. He now hopes the Swiss company will allow him to represent them locally so others can obtain this quality chair with less difficulty. He drives a Pontiac Montana minivan with EMC “drive-by wire” hand controls and lives in a wheelchair accessible home.

Last year he acted as his own architect and contractor to fix

More information on Felling’s ongoing projects, the detailed story of his crash complete with photos and video news coverage, as well as many disability and advocacy resources can be found on his personal Web site at: www.

MarkFelling.com. More information on the Sky Chairiot project can be found at www.

BroadenedHorizons.org. His company’s Web site is www.

GimpGear.US.

June 10, 2006

LETTER - Cont. from p. 2 PCPOs and audit, investiga- (e.g. treatment for pressure tion, enforcement, and correc- sores, infections, anxiety, panic, tion duties for DHS. depression, learned helplessness, addiction). Additional As I alluded to earlier, con- ongoing case management, sumers lacking timely, consis- counseling, and medication tent, and competent services may also be needed. These secmay experience a number of ondary services could dramaticostly and dangerous physical cally increase costs. and emotional complications.

In an environment where con- Third, consumers lacking adsumers have virtually no PCA equate access to qualified and service cushion approved, available PCAs may require PCAs are not paid competi- expensive admissions to an tively, PCAs are not paid a inpatient mental-health unit living wage, PCAs are not re- until more stable communityimbursed for travel costs or based support systems are retime between consumers, PCA developed. Such crisis admiscandidates are delayed or di- sions would ensure available verted from entering an indus- and consistent assistance with try already plagued by labor activities of daily living plus shortages, and consumers are help managing anxiety, panic, desperately attempting to re- and depression. It is important cruit and retain qualified to distinguish between inpaPCAs, conditions are ripe for tient mental-health versus problems. other inpatient services, which are typically unavailable to First, frequent and systemwide consumers unless they can fraud will occur during at- demonstrate acute physical tempts to merely survive. Con- ailments requiring hospitalsumers may try to innovatively based skilled nursing. Howutilize very limited resources ever, these improvised, inforto protect their health, safety, mal, yet effective safety nets and security. PCAs may in- are much more costly and less flate hours or steal toward efficient than services delivachieving a “living wage”. I ered via the PCA Program. do not condone or trivialize these acts. I simply think the In essence, DHS is unintenfrequency and scale are symp- tionally driving up its own, toms of more complex issues and taxpayers’, overall costs that remain unaddressed. At- by virtue of their chosen tempts to detect, document, and prosecute will only increase costs.

Second, consumers will likely be forced to accept less reliable, consistent, and quality services. Extended staffing transition, continued staffing turnover, inconsistency, instability, and insecurity will likely cause significant emotional distress (e.g. anxiety, depression, panic, and repeated exposure could lead to learned helplessness). Some consumers may cope via alcohol or drug use or other risky behavior. The risk for physical ailments will greatly increase.

These risks appreciably increase the chances a consumer will access acute medical care

13

MANAGED CARE - Cont. from p. 1 policies and procedures.

In my opinion, the lack of attention on more relevant service access and quality factors, lack of understanding and consideration for systemwide dynamics, lack of coordinated communication and participation among PCA Program stakeholders toward identifying and resolving factors impacting efficiency and quality, and lack of more effective policies and procedures increases the risk of abuse, neglect, and physiological harm for consumers. I believe these factors and DHS’s response have created—and are bound to exacerbate—at least patterned, if not widespread, actual and immediate jeopardy to consumer health and safety throughout the program. Not to mention increasing the chances of inefficiently using taxpayer money. Bottom line: I fear DHS may be risking class-action legal liability, its own integrity, the program’s integrity, and the very foundation of the independent living movement--consumers’ rights to life, liberty, and equality.

With at least three separate managed care efforts underway and the governor’s legislative proposal for significant mental health changes, advocates decided to work for legislation to both set some parameters for further managed care development and establish a stakeholder process. The new legislation includes several significant provisions which affect the future development of managed care for persons with disabilities using MA health coverage in Minnesota.

2006 CHANGES Medicare SNP + MA Basic Care

The most significant change allows Medicare special needs plans to offer Medical Assistance basic care services in a managed care arrangement on a voluntary basis for persons with disabilities. Given that there are two disabilityfocused Medicare SNPS now operating, it is likely that these two plans will seek to provide MA basic care services for voluntary enrollment during Sincerely, 2007. The Medicare SNP + Lance H. Hegland MA Basic Care Plan is reConsumer, Advocate, and quired to be voluntary so that Consultant enrollees may decide to join if they believe the plan will meet their needs. If an enrollee who joins finds that the plan is not satisfactory, the individual is free to dis-enroll.

Another very significant issue in managed care is whether continuing care or long-term care services will be included with basic care.

The Medicare SNP + MA Basic Care excludes home and community waiver services, case management for persons with developmental disabilities and ICF/MR services. In addition, PCA services will only be included to the extent determined by the commissioner after consultation with the stakeholder group. There is concern that continuing care

and community support services are different from primary health care services and, consequently, further consideration and analysis should occur before including those services in a managed care health plan.

Stakeholder Group Secondly, the legislation establishes a state-level stakeholder group for consultation with the Commissioner of Human Services on specifications for the Medicare SNP + MA Basic Care contract, implementation efforts, consumer protections, quality assurance measures, data collection and reporting and evaluation of costs, quality and results. In addition, the legislation requires that local or regional stakeholder groups are to be established for consultation by each health plan seeking to contract for Medical Assistance Basic Care services for persons with disabilities.

MnDHO Expansion Third, the legislation establishes provisions for the expansion of MnDHO beyond the current two demonstration projects. Expansion of MnDHO will not occur until January 2008. Plans for further expansion will be the subject of consultation with the stakeholder group. MnDHO’s two projects now include all basic care as well as all longterm or continuing care for about 670 enrollees with disabilities in Minnesota. The stakeholders will examine the structure and policies of the current demonstration projects to learn about the aspects of the programs which are important for success with persons with disabilities. A key discussion point on MnDHO expansion will be whether and how to include home and community waiver programs within a managed care plan.

Plans for further expansion of MnDHO will be presented to

the legislative committees by February 1, 2007.

Health Plan Data Finally, the Department of Human Services is required by the new legislation to report aggregate health plan data in a form which will allow tracking of services provided, major categories of spending and criteria for service authorization. Advocates want to assure that data now available on health care provided to persons with disabilities under Medical Assistance continue to be available as persons with disabilities enroll in managed care. Because health plans will be paid a set monthly amount per person whether services are provided or not, advocates contend that tracking spending and health care services provided is extremely important in order to assure that persons with disabilities receive needed services.

In the coming weeks and months, it is expected that the Department of Human Services will meet with stakeholders to begin development of the Medicare SNP + MA Basic Care coverage as well as to confer on issues regarding the inclusion of continuing care, including personal care assistant services in managed care plans. The legislation itself (Chapter 282, Article 20, Sections 28, 29 and 30) can be found through the legislative Web Site www.revisor.leg. state.mn.us. Individuals interested in more information about the stakeholder process can contact the Consortium for Citizens with Disabilities (www.c-c-d.org ) or a disability advocacy group with representation on the stakeholder group, such as Arc Minnesota, National Multiple Sclerosis Society Minnesota Chapter, Courage Center, National Alliance for Mental Health, and the Governor’s Council on Developmental Disabilities. ■

14

June 10, 2006

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.

Acclimate April 1 - June 25, 2006 Commonweal Theatre, 206 Parkway Ave. N., Lanesboro; ASL: Sunday, June 4, 2:00 p.m.; Tix: Reduced to $10, 507-467-2525, 800-657-7025 or tickets@commonweal theatre.org; www.common wealtheatre.org

Flaming Guns of the Purple Sage June 2 - 25, 2006 Theatre in the Round Players, 245 Cedar Ave., Mpls. AD: Sun., June 25, 2:00 p.m.; Tix: $20; 612-333-3010; www. theatreintheround.org

Steel Magnolias June 2 - 25, 2006 Park Square Theatre, 408 Saint Pippi Longstocking Peter St., St. Paul. AD and April 25 - June 18, 2006 Children’s Theatre Company, ASL: Sat., June 17, 7:30 p.m.; 2400 - 3rd Ave. S., Mpls. AD Tix: ½ price; 651-291-7005; and ASL: Wed., May 31, 10:30 www.park squaretheatre.org a.m.; Fri., June 2, 7:30 p.m.; West Bank Story Tix: Reduced; 612-874-0400; June 2 - 25, 2006 www.childrenstheatre.org Bedlam Theatre at Mixed Blood Theatre, 1501 S. 4th St., House at Pooh Corner Mpls. AD: Sun., June 18, May 25 - June 25, 2006 Lyric Arts Company of Anoka 2p.m., hands-on tour before at Main Street Stage, 420 E. the show. ASL: Sat., June 24, Main St., Anoka. ASL: Fri., 8p.m.; Tix: Reduced to $10; June 2, 7:30 p.m.; Tix: $12, 612-338-6131; www.bedla.m. $10 student/senior, 763-422- theatre.org 1838; www.lyricarts.org La Cage aux Folles June 2 - 25, 2006 Cida Mpls. Musical Theatre at May 27 - Aug. 27, 2006 Commonweal Theatre, 206 Hennepin Stages, 824 HenneParkway Ave. N., Lanesboro. pin Ave., Mpls. AD and ASL: ASL: Sun., July 23, 2:00 p.m.; Sun., June 11, 7:30 p.m.; Tix: Tix: Reduced to $10, 507-467- $17 (reg. $24); 612-673-0404; 2525, 800-657-7025 or tick ASL/AD Hotline: 612-373ets@commonwealtheatre.org; 5650; www.aboutmmt.org www.commonwealtheatre.org

I Just Stopped By to See the Man June 2 - 25, 2006 Penumbra Theatre Company at Martin Luther King Center, 270 N. Kent St., St. Paul. ASL: Sat., June 10, 8:00 p.m.; Tix: 651-224-3180 (specify ASL); www.penumbratheatre.org The Glass Menagerie June 15 - July 1, 2006 Bloomington Art Center Gallery Theater Company at Bloomington Center for the Arts Black Box Theater, 1800 W. Old Shakopee Rd. ASL: Fri., June 23, 7:30 p.m.; Tix: $12, $10; 952-563-8587; www.bloomingtonartcenter.com

Ave. NW. AD and ASL Sun., June 25, 2:00 p.m.; Tix: Halfprice for AD/ASL patrons; 763-391-ARTS (2787) or mail@crossplayers.org; www.crossplayers.org Forty-five Minutes from Broadway June 16 - Aug. 26, 2006 University of Minnesota Centennial Showboat Players at Harriet Island Regional Park, St. Paul. ASL: Fri., July 14, 8:00 p.m.; Tix: $20; Paddelford Packet Boat Company, 651-227-1100 or www.Show boatTheater.com

Heartbeat: Celebrating Rhythm and Body A 6-Play Buffet: 6 Short June 17 - 18, 2006 Plays by 6 Playwrights One Voice Mixed Chorus Mu June 16 - 18, 2006 Daiko at Great American HisNorthern Vineyards Winery, tory Theatre, 30 E. 10th St., St. 223 N. Main St, Stillwater. Paul. AD: Sun., June 18, 3p.m.; AD/ASL: Sun., June 18, 7:30 Tix:612-332-1302;www.ovmc.org p.m.; Tix: Reduced to $10 (reg. $15); Theatre Associates of Brooklyn Stillwater, 651-439-0993 or June 20 - 25, 2006 info@StillwaterTheatre.org; Ordway Center for the Perwww.stillwatertheatre.org forming Arts Main Hall, 345 Washington, St. Paul. ASL: The Wizard of Oz Fri., June 16, 8p.m.; AD: Sat., June 16 - 25, 2006 June 17, 2p.m.; Tix: $38-$60; Cross Community Players at 651-224-4222, TTY 651-282Osseo High School, 317 - 2nd 3100; www.ordway.org

YOUR NEW GUTHRIE OPENING JUNE 25.

MACT Fast Fest June 23 - 24, 2006 Minnesota community theatres will perform 20-minute plays at Pioneer Place on Fifth, 22 Fifth Ave. S., St. Cloud. AD and ASL: Fri. June 23 George Maurer concert, 7:30 p.m.; Sat., June 24 sessions begin at 9 a.m., 1:00 and 7:00 p.m.; Tix: $9 per play session or $35 for whole event (Fri. concert, all plays and Sat. party); 952884-9676; www.mact.net 25 Years of Gay Pride: We’ve Come a Long Way, Baby!

June 23 - 24, 2006 Twin Cities Gay Men’s Chorus at Ted Mann Concert Hall, 2128 - 4th St. S., Mpls. ASL: Sat., June 24, 8p.m.; Tix: $1939, children half-price; 612624-2345; www.tcgmc.org

I Am My Own Wife nior, $6.50 child; 701-241June 23 - July 30, 2006 6041. For more info: 701-241Jungle Theater, 2951 Lyndale 4799; www.trollwood.org Ave. S., Mpls. AD: Thurs., July 6, 7:30 p.m.; Tix: ReJoseph and the Amazing duced to $8, 612-822-7063; Technicolor Dreamcoat www.jungletheater.com July 20 - Aug. 5, 2006 Off Broadway Musical TheSeussical atre at New Hope Outdoor June 28 - July 30, 2006 Theatre, 4401 Xylon Ave. N. Stages Theatre Company at ASL: Fri., July 28, 9:00 p.m.

Hopkins Center for the Arts (July 29 rain make-up); Tix: Mainstage, 1111 Mainstreet. Free; 763-531-5151; TTY ASL: Sun., July 23, 2:00 p.m. 763-531-5109; www.ci.newWed., July 26, 10 a.m.; Tix: hope.mn.us $14, $11; 952-979-1111; www.stagestheatre.org ADA 16th Anniversary Celebration Romeo Juliet July 26, 2006 June 28 - Aug. 6, 2006 Radisson University Hotel, Great River Shakespeare Fes- 615 Washington Ave. SE, tival at Winona State U. Per- Mpls. Keynote speaker, Barry forming Arts Center at Johnson Taylor, will discuss current and 10 th (Howard) Streets, Supreme Court decisions and Winona. ASL: Sun., July 23, the state of the Americans with 4:30 p.m.; Tix: $19; 507-474- Disabilities Act today. Story7900, at 79 E. 3rd St. down- teller Kevin Kling and jazz town or on www.grsf.org pianist Michael Deutsch will perform. Light refreshments Tasty Baby Belly Buttons available. AD and ASL Wed., July 8 - 30, 2006 6:30-9:30 p.m.; Tix: Free; to SteppingStone Theatre for reserve a seat call Betty at 651Youth Development at Land- 646-8342 or TTY 651-602mark Center, 75 W. 5th St., St. 2001, or bettyc@mcil-mn.org; Paul. AD: Tues., July 11, 11:30 www.adaminnesota.org a.m.; ASL: Sun., July 16, 2:00 p.m.; Tix: $9; 651-225-9265; Twelfth Night www.steppingstonetheatre.org June 29 - Aug. 5, 2006 Great River Shakespeare FesWicked tival at Winona State UniverJuly 12 - 23, 2006 sity Performing Arts Center, Orpheum Theatre, 910 Johnson and 10th (Howard) Sts, Hennepin, Mpls. ASL: Sun., Winona. ASL: Sun., July 30, July 16, 1:00 p.m.; Tix: $30- 4:30 p.m.; Tix: $19; available $81; ASL/AD offered if re- at 79 E. 3rd St. downtown, 507quested in advance: 612-373- 474-7900 or at www.grsf.org 5639 or 612-373-5609; hotline 612-373-5650; TTY 612-373- Minnesota Fringe Festival 5655; accessible@orpheum.

Aug. 3 - 13, 2006 com; www.hennepintheatre ASL and AD: Performances district.com/servicesd.asp to be announced at various venues in Mpls. Tix: www.

Fiddler on the Roof fringefestival.org or www.up July 13 - 30, 2006 towntix.com Trollwood Performing Arts School at Trollwood Arts and H.M.S. Pinafore Culture Park, 200 Kandi Lane, July 14 - Aug. 13, 2006 Fargo, ND. AD: Fri., July 14, Theatre in the Round Players, 8:15 p.m.; ASL: Fri., July 28, 245 Cedar Ave., Mpls. AD: 8:15 p.m.; Tix: Reserved Sun., Aug. 13, 2:00 p.m.; Tix: $13.50-17.50; general admis- $20, senior/student discounts; sion $11.50, $9.50 student/se- 612-333-3010; www.theatre intheround.org

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Minnesota State Fair Aug. 24 - Sept. 4, 2006 State Fair, 1265 Snelling Ave. N., St. Paul. Grandstand performers will include Rascal Flatts, Flaming Lips, Prairie Home Companion w/Garrison Keillor, Bonnie Raitt, Steve Miller Band, Alan Jackson, Brooks Dunn, Amateur Talent Contest, and more. ASL: Roving interpreters available to assist guests at daily events from 10 a.m. to 8 p.m. Interpreters or Audio Describers for Grandstand Shows must be requested two weeks in advance. Call 651-642-2262 or 651-642-2442 (TTY); tickets @mnstatefair.org. ■

June 10, 2006

SOUND - Cont. from p. 3 Hearing Aids Hearing aids are similar to tiny microphones—they help someone hear sounds better through amplification. Hearing aids deliver amplified sounds (via sound vibrations) from the eardrum and middle ear to the inner ear or cochlea.

Hearing aid technology is available that can adjust the volume of sounds

15

HOME - Cont. from p. 8

There is also a national relay system which allows the person on the TTY to call someone who does not have a TTY. They system also allows people using mobile phones and pagers to send emails, faxes, pages and call people who have TTY.

top board into a bowl placed in For additional guidance, I the hole of the lower board. would suggest you consult with your cabinet maker or installer.

A base cabinet drawer can be If you have access to the converted to store a pull-out internet, you can view some of ironing board that folds away these products on the followinto the space of a drawer. ing company Web sites, or feel When pulling out the drawer free to call the companies difront, the ironing board un- rectly to request a catalog or folds and rises to counter identify a showroom represenVisual Alert Signalers height. Other options include tative in your area. And reVisual Alert Signalers are de- wall mounted ironing boards member, bigger doesn’t always vices that use flashing lights to that recess into a wall cabinet. mean better when it comes to Hearing Loop alert the person who is hard of kitchens. ■ A Hearing Loop is a coil of hearing or deaf to the ringing wire that amplifies sound and of a phone or fire alarm or reduces background noise. other device.

Users of hearing aids with a loop can set their aids to a Conclusion Cont. from p. 8 certain setting to receive the The above list is only a sample. transmission. Hearing loops There are many more assistive and innovations with each Lisa Schmidtke is the Presican be permanently installed technology devices available other. Maddak, Inc. supports dent and Founder of Houseor portable. for people who are hard of products such as the Eye Drop calls Network. Their Web site, hearing. Many of these de- Guide which was developed www.housecallsnetwork.com, Text Telephones vices—such as text messaging in collaboration with the Brit- contains a directory of reText Telephones (TTYs) are and e-mail—have infiltrated ish Royal National Institute for sources that can help the growone communication option for mainstream society. You can the Blind. Body Cooler and ing population of seniors, dispeople who are deaf or hard of find out more by researching Body Warmer products, made abled people and their hearing. These devices look the topic on the Internet. There in Houston, Texas, help regu- caregivers live independently. like small typewriters and are excellent Web sites ex- late body temperatures using Housecalls Network also sells come with an LCD screen and plaining how the technologies NASA spin-off technology. So aids for daily lving and adapa cradle for the telephone. In work, how to have them evalu- trust your instincts—your tive clothing. Lisa Schmidtke order for a person to call on the ated, and where to buy them. homemade daily living solu- can be reached by email at TTY, the person on the other ■ tion could be tomorrow’s new- lisa@housecalls-network. end must also have a TTY. com or at 952-221-0722. est invention! ■ Housecalls Network does not endorse any particular provider and assumes no responsibility for transactions beEmployment ads are $16-$17 per col. inch. June 30 is the deadline for the July 10 issue. tween the readers of this arMail to: ACCESS PRESS, ticle and listed organizations.

EXECUTIVE DIRECTOR 1821 University Ave. Headwaters Foundation for Justice seeks an Executive Direc#104S, St. Paul, MN 55104 tor who would be responsible for the overall health, effectiveFAX 651-644-2136 ness and advancement of the foundation. Headwaters supports E-mail: grassroots organizations creating social, racial, economic and access@accesspress.org environmental justice. Headwaters operates four grantmaking funds, an organizational capacity-building program and a JANITOR/ donor-development program. Request job description and MAINTENANCE application form by emailing jobs@headwaters Looking for an energetic indifoundation.org, downloading from www.headwaters vidual for P/T janitor/light foundation.org/jobs or calling 612-879-0602 x14. Cover maint. position in an apt buildletter, completed application, writing sample, references and ing in St. Paul. 4-5 hours day resume must be received by July 10, 2006. Headwaters is an shift. Fax resume to 651-489equal opportunity employer committed to affirmative action. 4538 or call 651-488-9923.

People of color, women, people with disabilities and GLBT EOE candidates are encouraged to apply

Do you have a question for Jane and Accessibility Design? We’ll cover all of your questions in future issues of Home Access Answers. Contact us at: 952-925-030, info @accessibilitydesign. com

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MEMORIAM In the loving memory of Milo D. Lane, Jr. From Becky “Markie” and Terrance Franzen.

INDEPENDENT -

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16

June 10, 2006

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