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Inside ■ Peru man inspiring - pg 3 ■ Buying a vehicle? - pg 4 ■ Legislative updates - pp 8-9
H i s t o r y
N o t e P 2
“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself..” — Harvey Fierstein Nonprofit Org. U.S. Postage PAID Mpls. MN Permit No. 4766
Volume 20, Number 5
Minnesota’s Disability
Community Newspaper
May 10, 2009
Cuts to health and human services programs anticipated by Jane McClure
special session or at worst a state government shutdown. The House bill passed 8549; the Senate passed its health and human services bill on a 40-23 vote margin. Cuts to health care in both bills are in the hundreds of millions of dollars, with the Senate making deeper cuts than the House. But Gov. Tim Pawlenty is proposed even greater cuts of $1.7 billion, which has set up a showdown between him and state lawmakers. Minnesota Consortium for Citizens With Disabilities, (MN-CCD) and the Arc of Minnesota and a host of groups have been rallying to oppose the cuts. But despite hours of testimony, rallies and organized call-in days, the picture doesn’t look good. In one letter to members, MN-CCD Coordinator Anni Simons wrote, “We are at one of the most critical times in the evolution of our communitybased services system – maybe the biggest challenge to the system we have ever faced. Individuals and programs are all at great risk. ” “In our previous alerts and Larry Lubbers and Rick Cardenas speaking out at the Capital updates, we’ve highlighted Disabled Minnesotans and advocacy groups may remember the 2009 session of the Minnesota Legislature as one of the most difficult they have seen. Despite the final outcome, brutal cuts to a wide range of health and human services are likely. Conference committees were working on House, Senate and
gubernatorial proposals as Access Press went to press. The House and Senate passed their health and human services bills late April, with House debate stretching far into the night. State lawmakers are to adjourn May 18 but many veteran capitol observers believe that will not be possible. That would bring the possibility of another year of a costly
provisions in health and human services spending proposals by both the Governor and the House that are unfair. We want fairness restored. But as bad as those proposals are, things are getting worse — and could get much worse. “ The Senate’s health and human services bill has greater cuts to some disability supports than the House bill, Simons noted. Nor has Pawlenty wavered on his cuts. She noted that the House bill may be “as good as it’s going to get” for people with disabilities. Another fear for MN-CCD is that the situation could deteriorate further as there are rumblings that some legislators who may have supported tax increases necessary to preserve the service system are getting skittish. If there is no tax increase, the House could make cuts twice as large as they’ve done already—or even larger, according to House Health and Human Services Finance Chair Rep. Tom Huntley, DFL-Duluth. A bleak economy, combined with rising costs and the un-
Katie Wornson Knaak (L) and Nikki Villavicencio-Tollison (R) joined in the rallied at the capitol to stave off cuts. certainties attached to federal economic stimulus funding, complicate debate over health care spending. Another wrinkle is that demand for services is rising while the state has less money coming in. Health care is the fastest-rising part of Minnesota’s budget. One looming factor in the debate between the governor
and DFlers is the prospect of tax increases to help cover the rising costs. Pawlenty has vowed to veto tax increases this session. The state is looking at about $2 billion in health care-related help from the federal government, as a result of the economic stimulus package. The Cuts - cont. on p. 11
Only $2 million eyed Department of Justice complaint outlines need for spending on accessibility by Jane McClure The Minnesota Consortium for Citizens with Disabilities (MN-CCD) has filed a federal Department of Justice (DOJ) complaint against the Minnesota Department of Transportation (MnDOT) and a number of other governmental agencies, alleging that Minnesota’s highways, roads, streets and sidewalks aren’t in compliance with the federal Americans with Disabilities Act (ADA). MN-CCD is a broad-based coalition of organizations of people with disabilities, providers and advocates, dedicated to improving the lives of people with disabilities. MNCCD’s primary focus is public policy issues. The DOJ complaint was filed last month against MnDOT, the Metropolitan Council and
the council’s Transportation Advisory Board (TAB). It also includes all or part of the 182 cities and townships within the seven-county metropolitan area including Minneapolis and St. Paul, as well as the counties of Anoka, Carver, Dakota, Hennepin, Ramsey, Scott and Washington. The state is receiving about $600 million for transportation and transit projects, with about half of that going to the sevencounty metropolitan area. The complaint alleges that the discrimination began in February of this year, with regard to discrimination on the basic of disability in the allocation of The American Recovery and Reinvestment Act (ARRA) transportation funding. The complaint also cites
Jan. 26, 1992 as the date that discrimination on the basics of disability in transportation facilities began. A number of violations were outlined in the DOJ complaint and noted in a letter by Joan Willshire, executive director of the Minnesota State Council on Disability. The letter stated that MnDOT has lacked an existing ADA transition plan, which has been required by law since 1995. MnDOT has the opportunity to address and to correct longstanding ADA violations, Willshire wrote, but the $2 million set aside isn’t enough. More funding is needed to make pedestrian bridges, sidewalks and curbs accessible. Disability advocates and organizations contend that vio-
lations have existed for decades. Interest in compliance has been heightened by the availability of federal economic stimulus funds for transportation and transit projects. ARRA funds sent to MnDOT for projects includes $2 million to correct ADA violations throughout the state, an amount MN-CCD and other disability community leaders describe as woefully inadequate. Some advocates have called for at least $30 million to address the violations. MN-CCD notes that replacing one inaccessible pedestrian bridge is estimated to cost $1 to $3 million. Add in bridges in greater Minnesota and the cost of replacing the bridges can rise to more than $30 million.
In the Twin Cities area alone, there are at least eight bridges accessible only by staircases. Another problem cited by disability advocates is deteriorated sidewalks along part of Highway 5/West Seventh Street in St. Paul. Some of the sidewalks have been rebuilt up to Randolph Avenue, but sidewalk improvements are needed between Randolph and downtown St. Paul. St. Paul also needs to spend $1.9 million to install more ADA-compliant signals and make other improvements, such as pedestrian push buttons, curb ramps and pedestrian signals at trunk highway intersections. Yet another issue is the need to replace pedestrian curb cuts throughout Hennepin County, at a cost of about $3
million. At least $44 million in needs have been identified in the metropolitan area alone. But one challenge for any project seeking ARRA funds is that projects need to be “shovel-ready,” with completed plans in place. How many ADA-related projects would meet that definition is unknown. In a recent update, MN-CCD leadership indicated that MnDOT has offered to discuss increasing the amount of funding put toward ADA-related projects. MnDOT officials have also indicated an interest in working with the disability community as the issues move forward. ■ Jane McClure is assistant editor of Access Press.
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May 10, 2009
Tim Benjamin, Editor With all the concern about cuts to state-funded direct care, I decided to look back at the history of Minnesota’s personal care assistance program. There were several recurring themes throughout the program’s history; but guess what the main concern has been since 1977? Fraud. From 1977 to 1988, PCAs were paid directly by the department of human services (DHS). DHS was very concerned about fraud but
the “fraud” that most prominently existed then was that PCAs were not paying their self-employment taxes. Was it really fraud or was it that PCAs were not knowledgeable enough about self-employment to know to pay the quarterly tax? Or was it that they did not know how to budget their poverty-level income well enough to save the money required? There is no need to argue now about what happened back then; there were problems on both sides. A lot of PCAs got in serious income tax trouble and had to dig themselves out, and the state lost money on taxes from those PCAs. In 1988, Personal Care Provider Organizations (PCPO) were put in place, and as I recall, the main issues were that these agencies were expected to take fiscal responsibility, reduce potential fraud and oversee the program. PCPOs were responsible to make sure PCAs only got paid for what they were allowed to
do, and they were obliged to maintain some sort of backup for the vulnerable adult recipient. As the program became better known,and deinstitutionalization began taking place in earnest, the costs of the program continued to rise—as adults who couldn’t direct their own care, children with developmental disabilities and TEFRA (families above the poverty level that needed supports for a disabled child) availed themselves of services necessary for communitybased care. The number of eligible recipients increased faster than expected and costs increase much faster than expected. In 1991, PCA services spending was cut because of allegations of fraud: this time, concerns about what a PCA can do and who could do PCA work. In 1992, a cost-effectiveness test was added to eligibility testing so that the in-home care costs couldn’t be higher than the nursing home costs. Categories of need were set up
which reduced the effect of some of the cuts from the 1991 legislation, but still, the ‘cost of living’ increase for the PCAs was eliminated. In 1995, Governor Carlson pretty much disassembled the program with a 22% cut, that eliminated from eligibility almost everyone who had come into the program under 1988 eligibility rules. A year later, in 1996, in a legislative session with outcry and grassroots involvement from the disability community, most cuts to the program’s budget were reinstated. Fast forward ten years. In 2005, Bailit Health Purchasing (a private firm that advertises that they have “assisted over 50 clients since 1997 to improve methods for purchasing or regulating health and human services”) worked with the state’s Long Term Health Task Force to complete a study that cited findings of (yet again) fraud in PCA services through managed care health plans. And now, in 2009, the Minnesota Legislative Auditor is-
sues a report with “significant concerns about fraud and oversight.” Many of the report’s recommendations are good legitimate ideas that I fully support, but each of these recommendations result in higher administrative costs and higher costs to the PCAs. So who’s going to pay for qualified professional supervision provided by RNs when the reimbursement rate to the provider is decreasing by 3%? Who’s going to take over the administration, and the clients, of AXIS, the managed care program in Minnesota? PCAs should have mandated training, says the report—but without any increase in wages. These are people taking care of our most vulnerable citizens, and they should have decent wages and good training. Instead, the recommendation is for decreasing wages, making them lower than employees make in the fast food industry. If these are to be professionally trained people with high levels of expertise (and they
should be!), they should be making professional wages. And whoever takes advantage of vulnerable children or adults should be prosecuted to the fullest extent, after intent to defraud has been proven. The agencies should be required to maintain appropriate documentation or be disenrolled—not for two years, but forever! I urge you again, contact your legislator, and tell them your story. Explain what a PCA does for you. And how your life would be without them—tell your legislators that your life really does depend on the quality of the PCA program. Ask them to consider all the money they’ve spent on transportation, on curb cuts, on education, on building accessibility. Then make sure they understand that if you can’t get out of bed because you don’t have a PCA, all that spending has been a wasted. ■
History Note
Taking babies from their moms seemed best for family by Luther Granquist In the 1940s, Dr. C. Anderson Aldrich, a highly respected pediatrician at the Mayo Clinic, advised that mothers should be separated from a child with Down syndrome (Mongolism was the term used then) immediately after birth. From 1942 to 1944, 67 babies in Minnesota were placed under state guardianship allowing for placement in a boarding home and, ultimately, a state hospital. In 1946, Dr. Benjamin Spock made a similar recommendation in the first edition of Baby and Child Care. Both Aldrich and Spock contended that the family would be far better off without a child with a disability and that the child with Down syndrome would
fare far better in an institution. In a speech given in St. Paul in 1947 on “Preventive Medicine and Mongolism,” Aldrich advised physicians to lie to the mother — to tell her that the baby was not strong enough to be brought to her and must stay in the nursery for a few days. Then the physician should meet with the father, relatives, and, if possible, a clergyman to develop a plan for placement that would be presented to the mother as a fait accompli. This plan, he said, had failed him only a few times in fifteen years. Two years later Robert Rosenthal, a pediatrics professor at the University of Minnesota reiterated Aldrich’s proposal at
an Institute on Mental Deficiency. But times were beginning to change. Another university professor, Dr. Reynold Jensen, advised at that same conference that ample time be provided parents of a newborn with an evident disability to consider what they ought to do. In 1956 he arranged a conference for physicians from Minnesota and surrounding states to advise them about how to deal with the parents. None of the presenters, leading physicians from around the country, mentioned Aldrich’s proposal. None of them suggested anything like it. Spock also tempered his advice in the 1957 edition of his famous book.
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 . Brigid Alseth, Mike Chevrette, Kelly Matter, Christen Munn, Anita Schermer, Carrie Selberg, Tom Squire and Kay Willshire Editor ......................................................................................................... Tim Benjamin Editorial Assistant .................................................................................... Jane McClure Business Manager ................................................................................. Dawn Frederick Cartoonist ..................................................................................................... Scott Adams Production ...................................................... Ellen Houghton at Presentation Images Webmaster ...................................................................................................... Alice Oden Distribution ......................................................................................... S. C. Distribution Advertising Sales Manager ................................................................... Raymond Yates Access Press is a monthly tabloid newspaper published for persons with disabilities by Access Press, Ltd. Circulation is 10,000, distributed the 10th of each month through more than 200 locations statewide. Approximately 650 copies are mailed directly to individuals, including political, business, institutional and civic leaders. Subscriptions are available for $30/yr. Low-income, student and bulk subscriptions are available at discounted rates. Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. We reserve the right to edit all submissions. Editorial material does not necessarily reflect the view of the editor/publisher of Access Press. Paid advertising is available at rates ranging from $12 to $28 per column inch, depending on size and frequency of run. Classified ads are $14, plus 65 cents 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. Inquiries should be directed to: Access Press • 1821 University Ave. W. • Suite 104S St. Paul, Minnesota 55104 • 651-644-2133 • Fax 651-644-2136 Email: access@accesspress.org • Web site: www.accesspress.org
In 1964, the Section on Developmental and Behavioral Pediatrics of the American Academy of Pediatrics honored Aldrich, who died in 1949, by establishing the C. Anderson Aldrich Award for pediatricians in recognition of the influence and guidance he had provided on many other child care issues. Gunnar Dybwad, one of the early leaders of the Association for Retarded Children, received that award in 1973. Always the consummate gentleman, Dybwad made no mention of Aldrich’s
preventive medicine recommendations in the lecture he gave at that time. He did not hesitate, however, to chastise those doctors who still continued to advise that babies with Down syndrome be separated from their mothers and placed in foster care or institutions. ■ The History Note is a monthly column sponsored by the Minnesota Governor's Council on Developmental Disabilities, www.mnddc.org or www. mncdd.org and www.part nersinpolicymaking.com
Dr. Benjamin Spock agreed with institutionalization in his 1946 book. His’s advice contributed to as many as 50,000 child’s deaths.
Donate to Access Press! The 2009 Charlie Smith Awards will feature a silent auction and raffle, with proceeds benefiting Access Press. Many donations are needed for this event, which will be held at the banquet in November. Goods and services, origi-
nal artwork and photos, gift certificates, gift baskets and new merchandise are sought as donations. All donors will be honored in event publicity and at the banquet. For information on how to donate, contact Access Press Office Man-
ager Dawn Frederick at 651644-2133 or dawn@acces spress.org Thank you for your support of quality community journalism! ■
May 10, 2009
Never taking “No” for an answer Living with muscular atrophy in Peru
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Newly designed ISEEK offers more tools
by Dr. Liliana Mayo My name is Dr. Liliana Mayo, Director of the Centro Ann Sullivan del Peru (CASP), and I would like to tell you about Julio, a person with spinal muscular atrophy who has been working as part of my team since 1987 and is 60 years old. When I met Julio, he lived in extreme poverty with his eldery mother in a 16square-meter house made from adobe that it had not running water or toilet, and not much to eat. In a time quite different from the present time, when his condition was diagnosed, he only was told, “Julio, I am sorry but your disease had no cure.” Even some physicians who had examined him predicted that he would not live very long. Julio understood how hard his life would be if he fought this battle on his own. That is, without
means and without support from the government. So he taught himself the English language to communicate with other people like him and institutions around the world conducting research about SMA, and he learned through specialized magazines that people with severe disabilities were joining the work force in developed countries with the help of computers, and that adaptive technology was making their lives easier. For a heart that knows no bounds, he had to make connections and get additional information so he could gain access to available technology in Peru. Julio has learned from the persistence that faith moves mountains, so he found people who helped him to get the basic things he needed to work and make a difference in his
Julio has worked hard to improve his life.
Kent’s Accounting Service, LLC Kent Fordyce 612-889-2959 • fordyce6@aol.com Fax: 952-472-1458 6371 Bartlett Blvd, Mound, MN 55364 Certified QuickBooks ProAdvisor 2009, 2008, 2007, 2006 & 2005
Julio travels narrow streets. life. In time, God answered his prayers, and he could get a second- hand battery-powered wheelchair, a computer with wireless keyboard, and an Internet connection to do additional work at home to pay for his part-time caregiver, and to help other disabled people less fortunate than him. Julio talks about how important it is for people with disabilities to have a job and to feel needed by other people. Julio works as our translator and is in charge of translating materials for professionals and families of people with different abilities, as well as of entering data about grades and attendance of parents at training meetings. Julio is my friend! He has turned 60 years old and is the only man with SMA in Peru who has reached this age working full time. Julio shows us what a person with a severe disability in Peru can do while working and helping other people to fight for their rights, persist and knock on doors to get what he needs in this stage of his disease and never, never take no for an answer. ■
A newly revamped Web site for ISEEK, a resource for career, education and job information, offers more tools and easy ways to search for education and training opportunities and new job possibilities. On ISEEK, www.iseek.org, you can: • find the most in-demand jobs and industries in Minnesota • assess your job skills • explore more than 500 careers • plan your education with descriptions for 250 public and private colleges and universities • create a resume • learn how to interview for a job and negotiate a salary
• find jobs posted on MinnesotaWorks Job Bank Job seekers can locate current and future in-demand jobs by geographical regions within Minnesota. People who have recently lost their jobs can quickly find training programs to upgrade their skills and the application for unemployment Insurance, among other things. A new interactive tool, RealityCheck, helps users identify their desired lifestyles and how to achieve those lifestyles through education and training and specific career choices. A wage and budget calculator determines the cost of living for different parts of Minnesota and calculates one’s monthly costs and the hourly wage needed to pay monthly bills.
The site also provides a comprehensive guide to career planning, hundreds of career descriptions, assessment tools, and a directory of Minnesota colleges and universities, and their program and course offerings, either online or onsite. Special sections are intended to serve the needs of immigrants and refugees, veterans, recently unemployed, parents, people with disabilities and ex-offenders. ISEEK is made possible by a collaboration of Minnesota state agencies and organizations that provide career planning, education and employment services. The Minnesota State Colleges and Universities system is ISEEK’s fiscal agent. ■
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May 10, 2009
Four things to know before buying a mobility vehicle by Ron Iverson All wheelchair vans are not created equally. The first thing someone needs to know when buying a wheelchair-accessible vehicle is that not all mobility products serve the same level of
needs, desires, functions and sign, fabricate and install the quality. The most popular lowered floor. mobility solution is the lowered floor. Only a couple of A manufacturer large national manufacturers should provide and several smaller regional • Constant research and demanufacturing companies development; to provide the latest in mobility solutions, with quality upgrades. • Continual safety testing and crash testing; to ensure secure transportation without an unnecessary safety risk. • Full compliance with all government and industry standards. With more than 15,000 vans sold annually, most manufactures learn quickly which products work well and which do not. Many national dealers can offer more locations with factory-trained technician and often higher resale and tradein value. Smaller dealers may offer more personalized and specialized local service. There are advantages and disadvantages to both. It is most important to purchase from a dealer you can trust with absolute confidence in the quality of the product manufactured. Finding a mobility dealer An individual looking for a wheelchair-accessible van could spend hours trying to find a mobility dealer. Often
when they do find a dealer, that dealer does not offer enough options nor has the inventory available to them to match the wheelchair user’s needs, desires or budget. Here are some questions to use to determine whether or not you want to do business with a specific dealer. • Can the dealership provide an option from more than one manufacturer? • It is better to have several options available, so that you can find a van that meets your needs. • Is your dealership QAP certified? • QAP stands for “Quality Assurance Program.” QAP is the highest level of certification provided by the National Mobility Equipment Dealers Association. When you work with a dealer that is QAP certified, you are assured of that dealer’s workmanship and integrity through the association. • Have your service technicians been factory trained and certified? • Factory-trained and certified technicians ensure that the wheelchair-accessible van you buy has been thoroughly inspected. It also ensures that any additional modifications like hand controls, power tie downs, transfer seats or electronic driving controls will be installed to factory specifications, which in turn meet all
Versions of in-floor and folding ramp for mini-van accessibility are pictured here. government standards. • Have your mobility consultants been factorytrained and certified? • Factory-trained and certified mobility consultants ensure unbiased information based on your needs, not what they have to sell. Factory-trained consultants take the time to learn about your situation and will offer options that will best meet your needs. Which van is correct for my needs? You have researched the manufacturers and the conversions they offer. You have also checked to be sure that the dealership you are working with needs the requirements set forth by the National Mobility Equipment Dealers Association. Now it is time to start to determine which van is correct for your needs. When working with a mobility consultant they will ask questions about if you plan to be a driver, passenger or if it is a caregiver situation.
A GREA T RESOURCE! GREAT
DirectAbility.com DirectAbility is a comprehensive, ever-expanding, award-winning, Internet directory devoted to disability-related products, services, resources and information throughout the state. Online at www.directability.com.
This will determine which conversion may work best not only for today but if the medical condition changes in the future, will it still meet your needs at that time? You will have the option of a side or rear-entry conversion, again determine which will best meet your needs. Also you can decide if you want a power or a manual conversion. One of the next most important questions is how tall you or your passengers sits in the wheelchair or scooter. This will greatly affect the ability to comfortably enter and exit the vehicle. In some cases this opening height may not be an issue, but keep in mind that as power chairs continue to get larger, will someone still comfortably fit through the door? Future resale of a van can also be affected by height and accessibility issues. If you have decided on sideentry conversion, you will have the option of in-floor or folding ramp. Both conversion will allow someone in a wheelchair to be secured in the mid-section, in the passengers’ seat area or if they plan on driving, in that position. A folding style of ramp allows for higher sides to the ramp. This can offer assurance to someone who is not accustomed to going in and out of a lowered floor van. It does have a few drawbacks that include an obstructed Vehicle - cont. on p. 14
May 10, 2009
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May 10, 2009
Regional news in review . . . Hearings set in elder abuse case Two young women accused in cases of elder abuse at Albert Lea’s Good Samaritan Society nursing home have their next hearings in May. The two were part of a group of workers alleged to have abused residents of the nursing home. Ashton Larson, 19, was to appear in court May 5, as this issue of Access Press went to press. Co-defendant Brianna Broitzman, also 19, will appear May 29. Broitzman and Larson each face charges of at least 10 counts of fifth-degree assault, criminal abuse of a vulnerable adult and mandated failure to report suspected abuse of multiple residents at the nursing home. The charges came in December after an investigation into allegations of abuse by the Albert Lea Police Department, the Freeborn County Sheriff’s Office and the Minnesota Department of Health. At hearings this month legal counsel for the two young women will be challenging the constitutionality of statements made to investigators. Lawyers for the two women are also seeking dismissal of criminal complaints. Details of the allegations surfaced last August after the release of the Department of Health’s report. It concluded four teenagers as well as Larson and Broitzman were involved in verbal, sexual and emotional abuse of 15 residents at the nursing home in Albert Lea. The residents suffered from mental degradation conditions such as Alzheimer’s disease and dementia. Larson and Broitzman were formally charged as adults for the alleged abuse, and four others, who were juveniles at the time of the alleged incidents, were charged for mandated failure to report suspected abuse. [Source: Albert Lea Tribune]
Guilty plea in Hamilton case A man accused of beating and torturing a disabled Lakeville man last year has pleased guilty to three of 10 charges against him. John Maniglia, 20, of Northfield, will be sentenced June 15 in Dakota County District Court by Judge Tim Wermanger Maniglia is accused of being involved in two nights of brutal attacks against Justin Hamilton in October 2008. Justin Hamilton, 24, of Lakeville, was attacked and beaten by Maniglia
and four other people. Hamilton was kicked and beaten more than 100 times, tied to a tree and burned repeatedly with a cigarette lighter. The crime provoked outrage as well as an outpouring of support for Hamilton. Maniglia entered the guilty pleas April 14 in Dakota County District Court. In exchange for the pleas to third-degree assault and false imprisonment, prosecutors agreed to drop seven other charges including kidnapping, theft and robbery. It is anticipated that Maniglia will serve eight years in prison, due to the cruelty of the crime. One other person involved in the crime, Natasha Dahn, 16, of Lakeville, has already pleased guilty to four felony charges. She was sentenced to 60 to 90 days in juvenile detention, one year in a secure residential counseling program and eight years in an adult prison. The prison sentence will be imposed if she violates probation. Dahn, who had befriended Hamilton, is seen as the instigator of the attack. Glen Ries, Jonathon Diepold and Timothy Kettering also face charges in the incident. Diepold’s trial was to start April 27 after deadline for Access Press. Reis’ trial is May 11 and Kettering is set for trial June 22. [Source: Pioneer Press, Star Tribune]
greater repercussions for employees with disabilities, as those workers are more likely to be placed on light duty. Plaintiff Samuel Chetcuit, who has epilepsy, argued that his disability did not mean his total number of hours worked should be restricted. He was medically cleared to work overtime but United refused to let him do so. [Source: EEOC News]
Data base available to employers
The U.S. Department of Labor has unveiled a free, nationwide data base of 1,921 job candidates with disabilities seeking employment in a wide variety of fields. The data base is available to employers throughout the United States, including private and public sector employers. The new data base is made available through the efforts of the Workforce Recruitment Program for College Students with Disabilities, which compiled the data base. Recruiters were sent to college campuses to interview eligible undergraduate and post-graduate students, as well as recent graduates. “Historically, people with disabilities have consistently experienced difficulties finding employment regardless of the economic climate,” said Secretary of Labor Hilda L. Solis. “Providing an internship or first job to someone with a disability can provide a real jump-start in launching a successful career.” Other federal government agencies may access the data base at wrp.gov. Other prospecUnited Airlines to pay tive employers can call 1-866-327-6669. [Source: U.S. De$850,000 for disability discrimination United Airlines has agreed to settle a federal lawsuit alleging partment of Labor] that its overtime policy violated the Americans with Disabilities Act (ADA). The U.S. Equal Employment Opportunity Electroshock controversy continues Commission announced the settlement recently. The lawsuit Ray Sandford, a Columbia Heights man undergoing forced was filed in U.S. District Court in the District of Northern electroshock treatment, continues to find support to have the California and affects current and former workers at San involuntary treatments ended. He endured another treatment Francisco International Airport. Its settlement means United last month. But the status of future treatments is unclear will pay $850,000 to a class of employees with disabilities. because his psychiatrist, Dr. Knudson, who has been ordering United has also agreed not to enforce such a policy in the future. the treatments plans to quit due to pressure from the group The lawsuit arose from a charge filed by a storekeeper working MindFreedom International. If Sandford is quickly assigned a for United at San Francisco International Airport. United had new psychiatrist more sensitive to his human rights and need a policy of denying the opportunity to work overtime for for humane alternatives, then he could be free of his ongoing anyone placed on light or limited duty. This was seen as having Regional News - cont. on p. 14
May 10, 2009
Governor Pawlenty signs Accessible Crime Alerts Bill
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Honors given to those who eliminate barriers
by Clarence Schadegg Persons with disabilities should find it easier to get updates on crimes in their communities, thanks to the 2009 Minnesota Legislature’s passage of the Accessible Crime Alerts Law. The new law was signed into effect by Gov. Tim Pawlenty on April 16, following unanimous approval by the House and the Senate. It took two tries for this bill to be signed into law. I sometimes write about legislative issues but this bill was my opportunity to work first-hand on legislation. The new law requires law enforcement agencies to provide violent crime alerts to citizens who request notification. It requires crime alerts to be distributed in a format that disabled citizens can easily access. Thanks to the new law, some blind screen reader users will find it easier to access electronic crime alerts. A screen reader is a product blind people purchase and use to read anything that is on the computer like e-mail messages, surfing the Web, writing and editing documents and doing other tasks. If a screen reader cannot open a Portable Document Format (PDF) attachment, that’s not accessible. The new law was a few years in the making. In 2006, I asked local elected officials to help me draft a bill to improve the access to electronic crime alerts for people with disabilities. My motivation for this bill was to increase the opportunity for those of us with a disability to have better access to electronic public safety information circulated among the general public. Another motivation was to come up with some way to reduce the cost to law enforcement agencies to circulate public safety information. Accessible electronic crime alerts are less of an expense and more practical then door-to-door printed handouts. Blind people would not be able to read such print information without assistive technology or a sighted reader. A visually impaired or blind person cannot easily read printed crime alerts handed out door-to-door, unless he or she has a Kurzweil 1000 reader programmed onto the computer to read printed documents scanned by a scanner. However, the Kurzweil program will not read print documents with graphics. It’s difficult to know how many people with disabilities have use of the Kurzweil 1000 equipment. I use the Kurzweil 1000 and it’s great for use to read text only documents. But the device costs almost $1,000 and may be out-of-reach financially for many people.
Another issue is cost to local units of government in tight budget times. It is an extra cost to design, print and go doorto-door to hand out paper print products. Not every community has staff or volunteers to handle such a task. Since more people use computers, a screen reader is a preferred way for persons with disabilities to read electronic crime alerts. It is a more practical way to circulate public safety information to a larger part of the general public. Former Sen. Dan Larson, DFL-Richfield, helped to get the ball rolling on the proposed legislation. Also from the beginning, Rep. Paul Thissen,
“Though this bill won’t solve all of the crimes carried out against those of us with disabilities, it will at least give us better access to information that will improve our public safety.” DFL-Minneapolis helped me to draft the bill into an acceptable format for approval by the Legislature. Thissen introduced the accessible crime alerts bill in the House and it passed the first of several hurdles. Sen. Ken Kelash, DFLMinneapolis, introduced SF 263 to the Judiciary Committee in the Senate. And like Rep. Thissen, Sen. Kelash also gave testimony as part of the process to explain the need for this bill. Legislative Analyst Jeff Diebel made this all possible by taking my information and crafting a well-written bill that passed through all committees. Amanda Sames, legislative assistant for Kelash, kept me updated and informed at every step of the process. Under the new law, all law enforcement agencies across Minnesota will be required to
format electronic crime alerts in either MS Word attachments or use MS Word as a format for a crime alert in the body text of an e-mail message. That means any law enforcement agency that may have selected to use PDFs to spread such information must now use MS Word only when PDFs are not accessible by screen reader users. If a screen reader cannot open up a PDF, the Word documents are a necessary alternative to PDFs in the dissemination of information critical for public safety to those of us with a disability. This is important because a blind person will not be able to access crime alert information if a PDF is not formatted for screen reader use. Not all blind people may have an updated version of a screen reader that may make it possible to read all websites and PDFs. An upgrade to a screen reader may be too costly for some people. For example, it would cost me $550 to upgrade my screen reader program to a current and improved version. My screen reader would have little positive effect regardless if the screen reader version cannot access and read a PDF. The new law also changes how information is disseminated by jurisdiction. Until now statewide law enforcement agencies had the option to distribute crime alerts to people only within a respective jurisdiction. Now it is easier to request information even if you do not live in a specific jurisdiction. Some of us are often perceived as more vulnerable to assault, robbery or worse. And we’re at an increased risk of becoming a victim during turbulent economic times like these. Though this bill won’t solve all of the crimes carried out against those of us with disabilities, it will at least give us better access to information that will improve our public safety. ■
Thirteen Minnesota citizens, educators and organizations were recognized April 14 in the Minnesota State Capitol Rotunda for their commitment to removing barriers to independence for people with disabilities. The Minnesota STAR Program’s Excellence in Assistive Technology Awards honor individuals and groups that remove barriers to independence through the use of assistive technology (AT). AT is any device that maintains, improves or increases function at home, school, work and in the community. Examples include a pencil grip, a desk riser for accommodating a wheelchair and a communication device that generates speech, controls appliances and performs computer tasks. Among the award recipients are pioneers in the field of assistive technology, educators, professionals and consumers who promote the use of assistive technology. Individuals and service providers who have risen to the challenge of changing the lives of people with disabilities who use assistive technology were honored as well as two remarkable individuals who have taught other students, their teachers and others across the state about how they use assistive technology. STAR is Minnesota’s Assistive Technology Act Program, administered through
Joan Breslin Larson, Anita Schermer and Maxine Slobof were honored with the Lifetime Achievement awards. the Minnesota Department of Administration. The STAR program is federally funded by the Rehabilitation Services Administration under the Assistive Technology Act of 1998, as amended in 2004 (P.L. 108-364). The acronym STAR stands for System of Technology to Achieve Results. The mission of the STAR program is to help all Minnesotans with disabilities gain access to and acquire the assistive technology they need to live, learn, and work in the community. One of these award winners, Anita Schermer of St. Paul, is a board member for Access Press. Schermer was one of the Lifetime Achievement award winners. ■
Recipients of the awards: Lifetime Achievement Joan Breslin Larson, Shoreview Anita Schermer, St. Paul Maxine Slobof, Mendota Hgts AT Consumer Doug Crosby, Belle Plaine Dan Tomson, Wayzata Service Provider AgrAbility, Willmar AT Advocate Deen Swart, Hackensack AT Innovation Bruce Mulder, Minneapolis Educator Cindy Taplin Mason, Wabasha Monica Huntoon, Plainview Mike Sorbel, Maple Plain Kelly Dunn, New Brighton
The honorees enjoyed a ceremony in the capitol rotunda.
Community Collaboration Willmar Community Planning Committee
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May 10, 2009
Commentary
What I’ve seen Disability services make a difference, deserve support from state lawmakers by Mike Gude I’d like to add another good reason to advocate for human services spending: it makes lives of dignity possible for our brothers and sisters who have disabilities and helps keep their families together. In my work, I hear their stories and see the struggles of individuals living with a disability and the families who care for them. Located throughout the Twin Cities, many are members of our churches. I look at the children and adults in my own church who have disabilities, and how they contribute to our community. Tim, whose spinal cord injury requires him to use a wheelchair, edits a local newspaper. Michael, a kindergartner with Down syndrome, circulates among adults and children at the Sign of Peace, flashing a huge smile and extending his hand to everyone he sees. Just a couple of decades ago, they and other parishioners with disabilities likely would have been in an institution and shut off from society, their lives disregarded and their gifts denied. Today, parents and family members in our churches throughout the Twin Cities do a tremendous job of raising and caring for their sons, daughters, and siblings with disabilities. But they don’t – and can’t – do it alone. On the east end of the metro area, Judy Blackford and her husband take care of their adult son John, who has autism and spina bifida. Thanks to school programs and job supports, John has a job in the community performing computer data entry, earns a good wage and volunteers in his community. Every penny of his earnings, Judy said, pays for a weight program at an area therapy center that keeps his nervous and muscle systems strong so he can keeping using his walker for mobility. This has kept him healthy and active, and saved money on
medical costs in the process. On the west side of the Twin Cities, Steve Hayes lives with his family. His adult son Brett has severe developmental challenges, including frequent seizures and a tendency to wander off if unattended. “We always have to keep an eye on him,” Steve says. “His seizures can result in him falling and hurting himself if left alone. And we keep the house locked so he doesn’t stray far from us.” Family life for the Hayes’ is next to impossible without outside support. The personal care attendants who come to their house and help care for Brett enable Steve and his wife Maureen to do laundry, mow the lawn, and meet the needs of their other children – ordinary tasks that make any household function and keep it together. “People who don’t have a child with disabilities don’t understand how consuming it can be,” Steve stressed. “It’s non-
“Now the supports that have made such a difference for so many families are threatened by proposed state budget cuts.” stop. Brett needs help with every activity in his life – washing, showering, diapering, feeding, watching TV, walking …..everything. And as he gets bigger and stronger, his care becomes more demanding.” The Hayes’ look to the future, and they’re worried. “As Maureen and I age, our biggest fear is our continuing ability to care for Brett,” Steve said. I have arthritic knees and a repaired shoulder; Maureen has had three knee surgeries in the last 10 years. All that stooping and bending and care giving for our son Brett eventually takes its toll. We’ve applied for a place for Brett to live eventually in the community
with others his age, but we’ve been on a waiting list for that service for almost eight years and have been told not to expect an opening anytime soon.” In the heart of the Twin Cities, Rachel Nelson and Wil Totten raise three children including Danny, their 19-yearold with Down syndrome. The supports he’s received so far have made a huge difference. Dedicated staff adapted his school curriculum so he could be part of the regular beginning Spanish class and play percussion in high school musical groups. “His self-esteem shot up after he started those activities,” Rachel said. “He was walking an inch taller and felt so accepted by his classmates.” He now receives some services outside of school, too, which gives his parents the chance for an occasional evening alone together—something they haven’t been able to do in years. Now the supports that have made such a difference for so many families are threatened by proposed state budget cuts. Under at least one budget proposal, rehabilitation, physical, occupational, and speech therapies are on the cutting block for adults on Medical Assistance, including those with disabilities. State-funded dental services for adults, including those with disabilities, are targeted for elimination. Personal care attendant services for 2,100 Minnesotans could no longer be available. Budget proposals from Gov. Pawlenty, the Minnesota Senate and House all call for hundreds of millions of dollars in human service cuts. Cuts like these could jeopardize success stories like Judy’s, Steve’s, and Rachel’s. On top of that, 5,000 other Minnesota households still wait for serMy turn - cont. on p. 11
PCA funding cap has many negative consequences by Brigette Menger Anderson I work at Metropolitan Center for Independent Living (MCIL) and speak as a personal care attendant (PCA) provider who has listened to many concerns from consumers and direct support professionals (DSPs) on some proposed changes to PCA services. This is my message to Minnesota’s 45,000 PCAs and DSPs and their families. The message is very simple: ”The State of Minnesota respects home care workers’ right to a livable wage.” State lawmakers can very easily deliver this message by making sure that their support is not behind the recently proposed legislation which would limit the total number of hours that a home care worker could work to 248 hours a month; and no more than eight hours per day. The timing for this proposal could not be more debilitating for the state of Minnesota. The median wage for a home care worker in Minnesota is currently $10.61. Please consider this scenario: If a DSP is working 256 hours with one agency and an additional 20 hours with another agency, and he made $10.25 an hour, before taxes he would be earning $2,829 for the month. If that same individual were only permitted to work 248 hours, he would only be able to earn $2,542, a difference of nearly $300. Home care workers are budgeting down to their last pennies with their existing wages. I ask you to think about your constituents, and what they would say to you if you asked to take $300 a month from them. DSPs earn very low wages and very few have access to affordable health coverage, paid time off, retirement or any other benefits. Working with multiple clients and agencies to earn a livable wage is basic survival for many DSPs right now. If this proposal is adopted, we will see an even
greater dependency in our already-depleted food shelves. We’ll see an even greater rise in unemployment, because these second job helps to pay for child care, over-thecounter medicine, bus fare and gas in the car to get to work. When you take away access to livable incomes which allow a family to thrive and get ahead, the entire foundation of independence, dignity and prosperity becomes a lost dream. The resources to help rebuild from this potential crisis are far more costly than these meager savings. I am especially concerned about the 310 hours cap per month on PCA services. I believe that supporting this proposal creates an economic war on DSPs. It sets an unfair labor standard that suggests anyone who isn’t a DSP is allowed to work more than one job. But if you are a DSP and you worked 40 hours with one consumer and then part-time with another consumer with a different agency, that additional income will no longer be available to you. This is not the kind of job market or economy that displaced workers will readily find comparable secondary income. For consumers that use a DSP for a vacation, conference or other activity away from home, DSPs currently can be expected to work up to 16 hours per day, per labor regulations. This proposed change mean that the consumer would have to bring along two DSPs to ensure their needs are met and the DSP time doesn’t go over their legal time allotment. For consumers who have been allocated more than 10 hours a day and who have only one DSP this forces them to have a second DSP; two workers earning poverty level salaries. Some of these consumers choose not to hire another caregiver for privacy, continu-
ity of care and dependability reasons. I understand that some very difficult decisions need to be made to come up with a balanced budget. If the 310 cap has to be a solution that will prevent further cuts to consumers’ services and DSP wages, then consider my suggestions for how to make this 310 cut more approachable and more balanced for all involved. • The 310 cap has to be a monthly average. If we break it down into a weekly average as some have suggested, we run a greater risk of an agency not getting reimbursed for wages paid to a PCA, as the current protocol seems to be first agency to bill is the first to get paid. We also need to be mindful of not limiting staffing options that are needed on an emergency basis or for vacation or other purposes. • DHS will need to develop an on-line tool that will allow providers to go in and check the bi-weekly hours that have been billed under a PCA provider number. • Agencies will need documented protocols and provider support regarding wage and hour disputes that will be brought on by PCAs who continue to work more than the 310 hours per month. This tracking by providers is yet another additional administrative requirement that will not be matched with financial compensation. • We must push for the inclusion of PCA/DSP workers in the federal Fair Labor Standards Act. PCA hours are being reduced, Barriers are being put in place to them working additional hours that they and their families have come to budCap - cont. on p. 11
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Major erosion of disability services feared at capitol by Minnesota Consortium for Citizens with Disabilities (MN-CCD) Minnesota’s personal care assistant (PCA) program has provided functional supports to persons with disabilities to maintain themselves in their homes since 1977. Originally PCA services were provided to adults with physical disabilities who could direct their own care. Over the years, as the civil rights struggles for persons of all types of disabilities and ages took form, Minnesota’s PCA program evolved to provide functional support for persons with cognitive limitations, mental illnesses, children, and those who could not direct their own care, hence the need for a responsible party but not necessarily a parent invading and adult child’s independence. Minnesota’s use of PCA services which have allowed many to enjoy their civil rights to live in the most integrated environment possible will end for many and be restructured in significant ways which will erode the effectiveness of this service for more than half of the Minnesotans who now use it. The PCA program is being dismantled in numerous significant ways due to cuts proposed by Gov. Tim Pawlenty to deal with the state’s huge budget deficit and concerns
about fraudulent practices by a small percentage of PCA staff, agencies and recipients. Overall, the House adopted fewer of the governor’s PCA cuts than the Senate. The House position is less onerous because the cuts to PCA eligibility are less and a responsible party doesn’t have to live with the person who gets PCA services. The governor has proposed massive and fundamental changes to the way personal care assistant services are provided in Minnesota. The Senate adopted nearly 78% of the governor’s cuts for PCA services while the House adopted about 66% of those cuts. Although both the House and Senate did not adopt the governor’s proposal to drop 2,100 people from PCA services by requiring dependencies in two activities of daily living, both adopted new eligibility restrictions for the coming biennium. These will eliminate more than 500 persons from the PCA program by setting more stringent eligibility criteria by requiring at least one dependency (constant supervision or hands-on assistance) in one activity of daily living (ADL) or displaying Level I behaviors. Other significant changes
include the complete abandonment of a key, longstanding component of effective disability support services: individual consideration of needs. Under the guise of “simplification,” DHS has proposed in the governor’s budget, the elimination of individual consideration of a person’s functional need for assistance in their home environment as a basis for authorizing the amount of PCA services. Instead, DHS proposes to divide the 14,000 PCA recipients into 10 new home care rating categories (reduced from the current 21 categories) and give each category one standard amount of PCA time based on the median use of hours by people with similar characteristics during 2007. While currently individuals with disabilities are now assigned a home care category and within that category are authorized for and use a range of hours of PCA services to meet their needs, under the governor’s proposed changes everyone in a category will get the same base amount of PCA hours. DHS estimates that more than 6,500 persons will have their PCA hours reduced by an average of two hours per day. This rigid, cookie-cutter approach to providing supports
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to persons with disabilities is harsh indeed, and will have significant and unfortunate consequences for many across our state. A new proposal from the governor which was adopted by the Senate will require that anyone who needs a responsible party to direct their PCA care will have to live with a responsible party in order to qualify for PCA services. Individuals had to live with their responsible party until 2002. The change was made primarily for those who are elderly and living in their own apartment or home and for some adults who became disabled and wanted as much independence as possible. These individuals have persons acting as their responsible party, but do not wish to live with them. Also affected by the “live with” responsible party provision are those parents of adults with disabilities and adult children of elderly parents who are living with their family member and providing some PCA services for which they are paid as well as many hours of unpaid care and services. Since a person cannot be both the responsible party and the PCA for the same recipient, families who are being paid as a PCA and must rely on that income to pay for housing and food, face a horrible choice; either give up needed basic income from PCA wages or find a house or apartment large enough and a responsible party willing to move in together. Many caring families with modest incomes will be significantly destabilized if the “live with” respon-
sible party provision is enacted. The House is to be commended for refusing to adopt this illconceived attack on low and moderate income family caregivers which will certainly not save the $5 million in state funds described in the fiscal note. DHS estimates that this provision will eliminate 350 to 400 persons younger than65 years of age from PCA services because they do not live with the responsible party. An unknown number of seniors in managed care plans will be similarly affected. Unfortunately, there is no data from managed care plans which have been strong proponents of the governor’s PCA cuts, arguing that PCA services should be changed to a more medical model service and become more standardized and more regulated to prevent fraud.
Providers of housing with services will no longer be allowed to provide Medical Assistance-covered home care to their residents. In addition, there will be a thorough review of the services provided and paid for as housing with services to assure there is no duplication when Medical Assistance Home Care services are provided to residents of housing with services facilities. Step-parents will no longer be allowed to provide PCA services to their minor stepchildren. Only family foster providers (not staffed foster group homes) will be able to provide PCA services and then only if the services can be shown not to duplicate the foster care provided under contract. Under somewhat different provisions in both the House and Senate bills, PCA agencies will be required to pay PCAs from 65 to 75 percent of the PCA rate in wages and benefits. It is crystal clear that the lives of 19,000 Minnesotans with disabilities and seniors in Medical Assistance managed care plans will be significantly different, and in most cases, more difficult if the sweeping PCA cuts are enacted. As the legislative session concludes, there are some significant decisions about personal care assistant services still to be made. Clearly the House cuts less from PCA services than the Senate because of not adopting the “live–with” responsible party provision or the two ADL eligibility criteria. In addition to all of the cuts described here, PCA provider agencies will be cut at least three percent in their provider rate payment. Further, it is crucial to note that all of these cuts in the House and Senate are lower than they could be because they are part of overall state budget plans which raise taxes as part of the solution to balance the budget. The governor has stated on many occasions that he will veto any tax Erosion - cont. on p. 10
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May 10, 2009
Crowd celebrates News about people in our community self-advocacy People and places
compiled by Access Press staff Young people with disabilities—like their able-bodied peers—have hopes and dreams, needs and fears but, many of them feel isolated and have no one to share their struggles with and no one to encourage them and help them be all God designed them to be. Young Life Capernaum of Greater St. Paul helps fill the void many of these young people face. Capernaum gives kids and young adults with disabilities the chance to have fun, make friends, develop selfesteem and begin a relationship with their Higher Power. The program is a ministry dedicated to opening the door of faith for teens with physical and developmental disabilities, and serves teens and families of all religious and cultural backgrounds. Its goal to provide teens and young adults with disabilities the chance to experience growing and fulfilling friendships, to engage in activities that challenge their physical limits, to grow their potential, and to explore the relevance of faith in their lives. The program began in San Jose in 1986. It has been in Minnesota for the past six years with the ministry in the White BearMahtomedi Area launching in September, 2008. The local program offers clubs, camps, group studies, discussion, peer support and special activities such as bowling, movies, pizza parties and other outings.
by Bret Hesla
Lowe’s credits the campaign’s success to its loyal customers who value the importance of supporting efforts benefiting the local community. Shakopee Lowe’s store covered the entire front walls of their stores with Shamrocks ✦✦✦✦✦ which encouraged customers Retail stores and restaurants to ask about the program, leadthroughout the United States ing to more than $3,200 in sales. helped raise a record-breaking ✦✦✦✦✦ $18 million in Shamrocks against Dystrophy sales this Lora Ulrich was an engineer, spring. At the conclusion of an innovator and a world travthe 26th annual Muscular Dys- eler. She also believed that trophy Association (MDA) people with disabilities should Shamrocks against Dystrophy be able to enjoy outdoor accampaign, Lowe’s stores tivities. She spent many hours alone reported $4.3 million in on the slopes of Burnsville’s sales, nearly doubling the pre- Buck Hill teaching those who vious record of $2.3 million lived at the group home manraised by one retail grocery aged by her twin sister, Lona, two years ago. The $1 and $5 how to downhill ski. Shamrocks donations have She also volunteered for now raised more than $200 mil- many years as a timer at track lion for Jerry’s Kids. and field events put on by MinGenerous customers of the nesota Special Olympics. She more than 1,600 participating was also very active in DFL Lowe’s locations showed their politics and was a delegate for commitment to the Shamrocks the state convention last year. Against Dystrophy campaign Ulrich died last month at her through donations starting at home. She was 49 years old. $1. Several partners extended She is survived by her mother, the program beyond the original three brothers, two sisters and March 17 deadline due to its over- nieces and nephews. whelming success and the greater ✦✦✦✦✦ need in tough times that has left nonprofits struggling to raise Baseball, golf, tennis and funds. Although a nationwide handball were a big part of effort, all money raised stays in David Wexler’s life until he localcommunitiesandhelpsfami- was diagnosed with multiple lies living with muscular dystro- sclerosis in 1996. He went on to phy and related diseases. be a support group leader for the Minnesota chapter of the High school student with special needs, ages 9th grade21 years old, are welcomed. The local group also needs volunteer leaders. FFI: (651) 762-8483 or email jowoodbury @yahoo.com.
National Multiple Sclerosis Society. Wexler also was a champion fundraiser, a feat that in 2005 landed him in the society’s Fundraising Hall of Fame. In his lifetime, his combined fundraising and personal donations to the National MS Society totaled more than $550,000, said Emily Wilson, marketing coordinator for the Minnesota chapter. She and others discussed Wexler’s accomplishments with the Star Tribune. Wexler, 55, died last month at his home in Minnetonka. He had acute promyelocytic leukemia. Wexler was an outspoken advocate for people with disabilities. He once investigated and found that some metro area taxi companies charged higher fares for passengers who used wheelchairs or scooters. He filed a complaint with the Minnesota Department of Human Rights, which led to taxi companies having to charge the same rates for those needing accessible cabs, said Maureen Reeder, president of the National MS Society’s Minnesota chapter. Wexler worked as a lawyer who specialized in accident and personal injury cases. He is survived by his wife, two sons, his mother and other family members. ■
Self-advocates from across the state gathered in downtown St. Paul last month to celebrate disability rights, human rights and the joy of being together. From the opening sing-a-long to the participatory workshops to the dance to the closing proclamation, the crowd was charged up. “This wasn’t the outdated model of boring workshops, where experts lead and a passive audience nods—and nods off,” said planning team member Brian Jensen. Adults and transition-aged youth with disabilities, as well as allies, took turns teaching and learning, presenting and listening, leading and following. Clearly, self-advocacy has many faces. Workshops like
Blomster wins award
Roberta Blomster was honored with the 2009 Irving Martin Award based on her years of exemplary service to selfadvocacy. She currently serves as president of the Merrick, Inc. Wednesday Morning Self-Advocacy Group, serves as a representative to the SAM Metro Leadership Circle and is in the current class of Partners in Policy Making. Blomster has received numerAccess Press welcomes ous awards for her service to submissions for this column others, including the 2005 Outat access@accesspress.org standing Young Minnesotan or by calling 651-644-2133. from the Jaycees, an Eleven Who Care award, and the Andrew R. Richardson award from Cont. from p. 9 increase. If there is no tax in- contact disability advocacy crease enacted during this ses- groups such as the Brain Insion, the Health and Human jury Association of Minnesota, Services cuts will get worse. Arc Minnesota, National AlliThe conference committees are ance for Persons with Mental meeting to make final decisions. Illness Minnesota or the ConFor information on how to con- sortium for Citizens with Distact your legislators or you can abilities, visit mn-ccd.org ■
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Brian Heuring’s “I Can Speak for Myself” focused on selfadvocacy skills of personal power. Other sessions, like “Theatre for Life,” put on by Self-Advocates Minnesota Southwest Chapter, stressed a different kind of self-advocacy: community involvement and social change. Then there was just plain fun, like the Friday evening dance with band “Sons of the Beach.” Self-advocate Gail Larson from Bemidji summed up the spirit of this grassroots movement, “Everyone who came was involved. We all came to contribute.” For more information on the biennial conference, visit www.selfadvocacy.org ■
The Arc of Minnesota. She has testified on various bills at the Minnesota Legislature, including the 2005 Voter Rights Bill. In 2008 Blomster traveled to Qatar with Mary Kay Kennedy of Advocating Change Together to participate in Qatar’s International Forum on Children with Special Needs. Colleen Timbers, who nominated Blomster for this award, said, “Roberta stands for ‘Resourceful, Outspoken, Bright, Energetic, and Talented Advocate.’ She believes in the possibilities and takes the necessary action to make a positive difference in the world!” ■
Brian Jensen presents award to Roberta Blomster
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CUTS -
Cont. from p. 1
state has to accept the funding while meeting a number of federal requirements. But that money is likely to be one-time funding, which has in turned sparked another round of debate over whether using the money builds in longer-term structural imbalances with the state budget. Once the federal money is gone, the governor’s budget has even steeper cuts. Yet another complication this session has been the delay in getting fiscal notes to legislators. DFLers have com-
plained that delays in getting the notes, which provide information on how much various proposals would cost, have caused problems throughout the session. Delays in getting fiscal notes returned on health and human services bills have sparked numerous complaints and in some cases resulted in hearings being postponed and very irritated legislators. Legislators request the fiscal notes from the state’s Office of Management and Budget. The requests go to various state
Many people turned out for capitol events, but will their support be enough?
MY TURN -
agencies for information. That information is then sent back to the budget office and finally attached to specific pieces of legislation. During floor debate Sen. Linda Berglin, DFL-Minneapolis, said that while it is time to stand with people and help them through difficult times, the cuts will have a severe impact. Huntley, author of the House bill, also warned that despite efforts to mitigate cuts they will be felt. At one point during the House debate Huntley forced a vote to eliminate the state’s health care access fund. He opposes that type of drastic action but said he wanted to show how much support there is for fund. The funding pays for MinnesotaCare, the state program for low-income Minnesotans. Huntley’s motion failed 131-1. “This bill does contain $400 million in cuts,” said Huntley. “That means there are 400 million reasons to vote against this bill.” Still, there are deep divisions between the
Cont. from p. 8
vices. Some, like the Hayes family, wait for years. This delay exacts a price. As Steve said, “Too many of these families have passed their breaking point.” How can we talk about making dramatic cuts to services when we have so many unmet needs among those who need supports so badly? Judith talks with me in spiritual terms about her concerns for her son and others with disabilities. “I believe we are at a critical juncture for society, for humanity, for our spiritual values. Cutting back on hu-
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man services for people with disabilities reminds me of the days when they were devalued in this state, and I fear we are heading in that direction again. Now is an opportunity for all people of faith to be God’s hands, heart, voice, light, and love. People with disabilities need our voices to say that they matter to us, that we love them, and this will not happen on our watch!” Now is a prime opportunity for all of us to let state lawmakers know that direct services for people with disabilities should
be preserved, services that promote and protect the dignity of the human person and the integrity of our families. ■ Mike Gude is a member of St. Frances Cabrini Church and works as Communications Associate at The Arc of Minnesota, which advocates for persons with intellectual and other developmental disabilities and their families. This article is excerpted from a longer piece written for the Catholic Spirit newspaper.
Many groups have rallied at the capitol this spring. House, Senate and Pawlenty over how much the Minnesota Care fund should be given over the next two years. Health care is cut by $625 million in the Senate budget. The House cuts spending in that area by $400 million. Hospitals and health care providers would see their funding cut by both bills. The governor wants to eliminate or drastically reduce dental, speech therapy, and several other rehabilitation therapies as well as eligible for health care for 113,000 Minnesotans. People would be dropped from the rolls starting in January 2011. Other cuts would be made as hospitals cut services, ranging from dialysis to mental health treatments. Another change being watched warily by many in the disability advocacy community is cuts to the personal care attendant or PCA programs.
The House proposal would mean the loss PCAs for about 800 Minnesotans; the governor’s proposal would cut PCA service for about 2,200 Minnesotans. The Senate would cap the number of hours PCAs can bill the state. (See related story.) Advocates have been trying to defend the program in the wake of a recent state audit which found problems in the program. Advocates have strenuously disagreed with some of the audit findings and argued that while reforms are needed, the program shouldn’t be cut. Yet another concern is the impact the various bills would have on nursing homes and what they are paid by the state in reimbursements. That, too, will have to sorted out in budget negotiations. Officials from the state’s counties, which also provide an array of services to persons
with disabilities, are also warily watching the fate of the bills and the governor’s proposal. Counties use various program aids to pay for health and human services costs. The following numbers are for all county program aids; a breakdown of health and human services aids wasn’t available. Statewide, the governor would cut $42 million from counties ion 2009 and $110 million in 2010. The House would cut $15 million in 2009 and $99 million in 2010, with a greater cut in 2010 if counties adopt a half-cent sales tax. House members are pushing for counties to adopt a halfcent sales tax as a way to help cover their costs, a move many county commissioners statewide have questioned. The Senate wouldn’t cut program aids in 2009 but would make a cut of $9.4 million. Jane McClure is assistant editor of Access Press. ■
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get for. The very least we can do is assure that they are under the same classification as other workers and receive the same rights and protections, including overtime after 40 hours, not 48. To make sure that the right message is delivered across the state for all home care workers, you must personally get involved. Please visit the following websites to identify
who represents you in your district and to get involved in future DSP advocacy efforts. None of us can risk silence any more. Speak out on how a reduction in your income or a shortage in your staffing options will affect you! I ask lawmakers to NOT support this proposal. To do so would create barriers to employment that no other labor market imposes on its workers. More so, to support this pro-
posal would send the message to Minnesotans that home care workers do not provide a vital, cost-savings service to our state. The residents of Minnesota respects home care workers’ right to a livable wage. ■ Brigette Menger-Anderson works for MCIL. The preceding article was excerpted from oral/ written legislative testimony.
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.
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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. Selected performances offer reduced admission prices for the patron and one companion. When calling a box office, confirm the service (ASL or AD), date, time, ticket price and anything else needed, e.g. length of performance, etc. If you attend a show, please share your feedback with the performing organization, interpreter, and VSA arts of Minnesota. Accessible performance information is compiled by VSA arts of Minnesota, 612-332-3888 or www.vsaartsmn.org
See www.accesspress.org for complete listing and for Accessible Movie Theaters The Phantom of the Opera May 13 – June 7 Touring company at Historic Orpheum Theatre, 910 Hennepin Ave. S., Mpls. AD: Sat., May 16, 8 p.m. ASL: Sun., May 17, 1 p.m. Tix: $30.50-77; Phone: 612-373-5639 or 5609; hotline 612-373-5650; TTY 612-373-5655; E-mail: accessible@or pheum.com Web: www.hennepintheatre district.org/guestservices/ aslad/ Building Bridges May 14-16 Young Dance at Barbara Barker Center for Dance, 500 21st Ave., Mpls. ASL: Thurs., May 14, 1 p.m.; Fri., May 15, 7:30 p.m.; Sat., May 16, 2 & 7:30 p.m. Tix: $6-12; Phone: 612-423-3064; E-mail: info@ youngdance.org Web: www. youngdance.org Teach Me Tonight May 14-23 20% Theatre Company Twin Cities at Gremlin Theatre, 2400 University Ave., St. Paul. ASL: Fri., May 22, 8 p.m. Tix: Reduced to $10 (reg. $15); Phone: 612-227-1188; Email: tickets@tctwentyper
cent.org Web: www.tctwenty percent.org Don’t Drink the Water May 15-31 Rochester Civic Theatre, 20 Civic Center Drive SE. ASL: Sat., May 16, 8 p.m. Tix: $17, senior $14, student $12; Phone: 507-282-8481; Web: www.rochestercivictheatre.org The Odd Couple May 15 - October 23 Commonweal Theatre, 208 Parkway Ave. N., Lanesboro. ASL: Sun., June 14, 1:30 p.m. Tix: Half price (reg. $25, student $12), Phone: 507-4672525, 800-657-7025, E-mail: tickets@commonwealtheatre. org Web: www.common wealtheatre.org Arsenic & Old Lace Through May 17 Bloomington Art Center’s Gallery Theater Co. at Bloomington Center for the Arts, Black Box Theater, 1800 W. Old Shakopee Road. AD & ASL: Sun., May 10, 2 p.m. Tix: $17, senior/student $15; Phone: 952-563-8575 Web: www.bloomingtonartcenter. com
A Funny Thing Happened on the Way to the Forum Through May 17 Fargo-Moorhead Community Theatre, 333 4th St. S., Fargo. AD: Fri., May 15, 7:30 p.m. ASL: on request in advance Tix: Half-price (reg. $15, senior 65+ $12, student $9); Phone: 701-235-6778, 877687-7469 Web: www.fmct.org
The Paper Bag Princess Through May 17 Stages Theatre Co. at Hopkins Center for the Arts, 1111 Mainstreet, Hopkins. AD: Audio Description on request Tix: $15, $11 child (age 2-17) & senior (age 60+) plus $1.50 fee per ticket; Phone: 952979-1111; Web: www.stages theatre.org
Gilly Hopkins – The Musical Through May 17 Youth Performance Co. at Howard Conn Fine Arts Center, 1900 Nicollet Ave., Mpls. Tix: Reduced to half-price (reg. $10-12); AD requires advance reservation; Phone: 612-623-9080; Web: www. youthperformanceco.com
The Price Through May 17 Theatre in the Round, 245 Cedar Ave., Mpls. AD: Sun., May 17, 2 p.m., tactile tour 1 p.m. Tix: $20, senior/student discount; Phone: 612-3333010 Web: www.theatreinthe round.org
I Have Before Me a Remarkable Document Given to Me by a Young Lady From Rwanda Through May 17 Park Square Theatre, 408 St. Peter St., St. Paul. Tix: Reduced to half-price ($18.50); Phone: 651-291-7005; Web: www.parksquaretheatre.org
Red Ink Through May 17 Mixed Blood Theatre, 1501 S. 4 th St., Mpls. AD, ASL, Captioning: Thurs., May 7, 7:30 p.m. Tix: Reduced to $12 (reg. $22, student/senior $18, group $14); Phone: 612-338-6131 Web: www.mixedblood.com Around the World in 80 Days May 22 - June 28 Jungle Theater, 2951 Lyndale Ave. S., Mpls. AD: Thurs., June 11, 7:30 p.m. Tix: Reduced to $10 (reg. $28-36); Phone: 612-822-7063; Web: www.jungletheater.com Tiger Tales: Hmong Folktales Through May 23 SteppingStone Theatre, 55 Victoria St. N., St. Paul. AD: Fri., May 8, 7 p.m. ASL: Sun.,
May 17, 3 p.m. Tix: $11; child/ ($18.50); Phone: 651-291-7005; senior $9; Phone: 651-225- Web: www.park 9265; E-mail: boxoffice@step squaretheatre.org pingstonetheatre.org Web: www.steppingstonetheatre.org The Unexpected Guest May 29 - June 21 Anything Goes Theatre in the Round, 245 Through May 24 Cedar Ave., Mpls. AD: Sun., Lakeshore Players, 4820 June 21, 2 p.m., tactile tour 1 Stewart Ave., White Bear p.m. Tix: $20, senior/student Lake. ASL: Sun., May 3, 2 discount; Phone: 612-333p.m. Tix: Half-price for ASL 3010; Web: www.theatrein patron & companion (reg. $20, theround.org $18 student/senior); Phone: 651-429-5674; Web: www. 20 Days to Find a Wife lakeshoreplayers.com/ Through May 31 History Theatre, 30 E. 10th St., The Miss Firecracker Contest St. Paul. AD/ASL: Sun., May Through May 24 17, 2 p.m. Tix: Reduced to $15; Starting Gate Productions at Phone: 651-292-4323; Web: Mounds Theatre, 1029 Hud- www.historytheatre.com son Road, St. Paul. AD: Sun., May 17, 2 p.m. Tix: Reduced The Music Man to $10 (reg. $18, $16 student/ Through May 31 senior/Fringe button, high Bloomington Civic Theatre at school student $10); Phone: Bloomington Center for the 651-645-3503 Web: www. Arts, 1800 W. Old Shakopee startinggate.org or www. Rd. ASL: Thurs., May 14, 7:30 moundstheatre.org p.m. AD: Fri., May 15, 7:30 p.m. Tix: Reduced to $18 (reg. Raskol $25, senior $22, student $19); Through May 24 Phone: 952-563-8575 Web: Ten Thousand Things Theater www.bloomingtoncivictheatre.org at Minnesota Opera Center, 620 N. 1st St., Mpls. AD: Sun., 10 Minute Play Festival June 4-7 May 10, 8 p.m. Tix: Reduced to $18 (reg. $25); Phone: 612- Lakeshore Players, 4820 203-9502 Web: www.ten Stewart Ave., White Bear Lake. ASL: Sun., June 7, 2 thousandthings.org p.m. Tix: Half-price (reg. $12, $10 student/senior); Phone: Spider’s Web 651-429-5674; Web: www. May 29 - June 21 Park Square Theatre, 408 St. lakeshoreplayers.com Peter St., St. Paul. AD & ASL: Sat., June 13, 7:30 p.m. Tix: Reduced to half-price Perform - cont. on p. 15
Play explores Alzheimer’s The Guthrie Theater, in collaboration with members of the Minnesota Alzheimer’s community, Live Action Set has created My Father’s Bookshelf, a tragic comedy about our collective response to dementia. Follow the fluid reality of an extremely affable, optimistic man as he negotiates life with Alzheimer’s disease. In a world of doctors, care providers, grocery clerks, dogs, people who can’t remember and other people who try to take away the car keys, one man’s desire to discover the joy of life is set against the struggles of his family and the passionate lecture of a neuroscientist searching for a cure. Alzheimer’s is a disease that eats at the essence of human society; our ability to communicate. An estimated five million Americans are living with the irreversible, progressive brain disease that slowly destroys memory and thinking skills, while one in seven are closely related to someone with the disease. The yearly costs
associated with Alzheimer’s care exceed $148 billion and are expected to rise sharply in the next 10 years as baby boomers age. Live Action Set is a Twin Cities-based performance company founded in 2004 when four directors/choreographers/performers—Noah Bremer, Megan Odell, Galen Treuer and Vanessa Voskuil – came together to create a vehicle for the expression of their artistic interest and impulses. An ongoing experiment in collaboration, the company has created more than 14 original performances, each combining the talents of a unique ensemble of performers, directors, choreographers, designers, writers and researchers. Directed by Artistic Directors Noah Bremer and Galen Treuer, My Father’s Bookshelf is created in the rehearsal room with the cast – anchored by Jeune Lune co-founders Rosen and Barbara Berlovitz, Artistic Director Megan Odell, Four Humors
My Father’s Bookshelf is a play anyone interested in aging and Alzheimer’s issues should see. Artistic Director Jason Ballweber and Argentinean actor Dario Tangelson—from a script developed by Duluth writers Margi Preus and Jean Sramek. Paul Whitaker provides set and lighting design for his third Live Action Set production, with costumes by local fashion designer and Voltage founder Anna Lee, and stage management by Stacy Spensley. Play - cont. on p. 15
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Upcoming events To list an event, email access@accesspress.org May: Mental Health Month The National Alliance on Mental Illness (NAMI) of Minnesota and other organizations are involved in community education in May. Treatments are available and recovery is possible. Some form of mental illness affects about one in five people in their lifetime. If you or someone in your family is affected by mental illness, NAMI Minnesota offers educational classes around the state for families, information on mental illness, resources, and support groups. NAMI has more than 20 educational classes planned during May and has just launched eight new NAMI Connection support groups for people living with a mental illness and three new NAMI Vet Connection groups to help ease the stresses of reintegration for returning soldiers. FFI: www.nami helps.org or 651-645-2948 or 1888-NAMI-HELPS Arc annual meeting, awards Arc Greater Twin Cities Annual Meeting and Awards Celebration are 6:15 p.m. Tuesday, May 19 at Amherst M. Wilder Foundation, 451 N. Lexington Parkway, St. Paul. Kevyn Burger, host of the Kevyn Burger Show on FM 107.1, will emcee the event, which includes the presentation of Arc’s Change Maker Awards for 2008 to 10 individuals and organizations that are making a difference for people with intellectual and developmental disabilities and their families. The evening’s festivities will also include an accessory style show where fashion experts will show wardrobe accents from Arc’s Value Village Thrift Stores & Donation Centers. Cost is $10 for members and $15 for nonmembers. Pre-register. FFI: www.arcgreat errtwincities.org 952-920-0855
Simon Technology Center library. The sessions began May 5 but participants can still sign up for sessions May 19, June 2 and June 16 if there is space available. FFI: www.pacer.org or 952-838-9000
the most common form of cancer affecting African-American men. Attend a forum at noon, Tuesday, May 19 sponsored by Fremont Community Clinics, Jordan Area Community Council, Summit Academy and the American Cancer Life with baby Society. Call for location and Bringing Baby Home© & Be- other details. FFI: info@jor yond is a series of workshops danmpls.org or t 612-353-5601 hosted by HealthEast Care System at St. John’s Hospital, Sister Kenny art show Watson Education Center in The 46th annual International Maplewood, Tuesday evenings Art Show by artists with disin May. Learn about babies’ abilities ends Friday, May 22. It emotional intelligence, building is at the Sister Kenny Rehabilirelationships, infant and child tation Center, 800 E. 28th St., massage, the role of fathers and Mpls. Come and see works by being a better parent. Registra- artists from around the world. tion requested. FFI: Donna Call for hours. FFI: sisterkenny Corbo, Life.Connections@ @allina.com or 612-863-4463 yahoo.com or 651-208-0550 Attend upcoming retreat Spinal cord Franciscan Retreats in Prior injury symposium Lake hosts its annual Retreat Morton Cure Paralysis Fund for People with Disabilities, offers a free spinal cord injury May 22-24, 2009, at Francisresearch symposium featuring can Retreats, 16385 St. Francis Anthony J. Windebank, M.D., Lane, Prior Lake. The theme Mayo Clinic. The event is 1:30 is Meeting Jesus Today and p.m. Sunday, May 17 at Earle will focus on various aspects Brown Heritage Center, Brook- of our relationship with Jesus. lyn Center. Windebank con- Throughout the retreat there ducts neural regeneration re- will be opportunities to receive search at Mayo Clinic where the Sacraments of Reconciliathe Spinal Cord Injury Research tion and the Sacrament of the Group focuses on using tissue Sick as well as meet with an engineering to rebuild damaged individual retreat staff person. tissue and restore function. The suggested donation for the CEU’s available for medical retreat is $140-$160 for indiprofessionals. Pre-register. FFI: viduals, $280-$320 for couples www.mcpf.org or email kris. sharing a room. Register by May 15. FFI: Secretary@ stevens@mcpf.org FranciscanRetreats.net or 952-447-2182 Legal planning help PACER Center offers Life Miracle League benefit Planning for Persons with Disabilities, a free workshop for Baseball Hall of Famer and people with disabilities and Twins legend Harmon Killetheir families at 7-9 p.m. Tues- brew, hosts the 6th Annual day, May 19 at PACER Cen- Kwik Trip Harmon Killebrew ter, 8161 Normandale Blvd., Classic May 31-June 1. The Bloomington. Participants Killebrew Classic will benefit may attend either or both ses- the Twins Community Fund sions. Learn about health care and the Miracle League of Minpower of attorney, health care nesota. The Miracle League living wills, long-term-care provides opportunities for disissues, probate, revocable liv- abled children to play baseball ing trusts, supplemental needs as team members in an orgatrusts, and wills Each family nized league. The event feathat attends is invited to re- tures a dinner and auction at 6 ceive a free, two-hour consul- p.m. Sunday, May 31 on the tation from Life Planning for Persons with Disabilities to discuss how a comprehensive life plan could work in their situation. Pre-register. FFI: www.pacer.org or 952-8389000 or 952-838-0190 (TTY) or 800-537-2237
Assistive technology Webinar series PACER Center offers Minnesota Assistive Technology (AT) Webinar Series, a free opportunity for parents of children with disabilities and professionals to learn how AT can promote inclusion and learning. All sessions are on Tuesdays from 1 to 3:30 p.m., central time. Registration is required for individual sessions. Minnesota residents who attend at least three of the four live Webinars will receive Learn about cancer a free membership to the Learn about prostate cancer,
floor of the Metrodome in downtown Minneapolis. This dinner is open to the public and tickets are $150 per person or $1,000 for a table of ten. A celebrity golf tournament will be held on Monday, June 1 at Mendakota Country Club in Mendota Heights. Shotgun start is 10 a.m. This event is open to registered golfers only. FFI: www.har monkillebrewfoundation.org or 612-414-4506. Ethical issues and aging Ethical Issues in an Aging Society is a University of Minnesota Center on Aging conference offered Tuesday, June 2 at the Continuing Education and Conference Center, 1890 Buford Av., St. Paul. Costs are $50 to $110. FFI: coa@umn. edu or 612-624-1185
UCP Golf Tournament United Cerebral Palsy hosts its 13th annual golf tournament on Monday, July 20 at Oak Marsh Golf Course in Oakdale. Event sponsors are sought as are golfers. A range of sponsorship and advertising options are available. FFI: ucpmn stacey@hotmail.com, www.ucpmn.org Adaptive technology classes Free adaptive technology classes are offered by Hennepin County Library, at the downtown Minneapolis library, 300 Nicollet Mall. Classes are free but you must pre-register. Upcoming classes include job searches, Internet use, use of JAWS and the Magic magnifying program. In addition to classes there are often volunteers available to introduce patrons to the equipment and software available. Volunteer hours vary, so it’s best to call ahead. The Blind and Low Vision Computer User group meets in Room N402 1-3 p.m. the second Saturday of each month. Attend a meeting and network with oth-
ers. FFI: 612-630-6469, www. hclib.org Help others manage finances RSVP/Volunteers of America of Minnesota and AARP Foundation need volunteers with good budgeting and organizational skills to help manage finances of older or disabled low-income individuals. Have a few hours a month to volunteer? Money Management Program staff will train and match you with someone in the community. FFI: Money Management Program Coordinator, 612-617-7821. Be a literacy volunteer Last year, Minnesota Literacy Council volunteers helped more than 24,000 adults achieve their learning goals. Tutor immigrants, refugees and lifelong Minnesotans in reading, writing and English. Tutor oneto-one, in a small group or as a classroom assistant. Training, ongoing support provided. Opportunities are available throughout MN. FFI: Allison at volunteer@theMLC.org or 651-645-2277, Ext 219. ■
Rise Golf Tournament Rise, Inc. hosts its 17th annual golf tournament Monday, June 15 at Minneapolis Golf Club. WCCO TV Sports Director Mark Rosen is the event host. Golfers are sought as are donations of items for the silent and live auctions. Sponsorship “A Friend Indeed – the Bill Sackter Story” costs range from $400 to premieres at the Riverview Theater June 8 $5,000. Or pay $75 to attend the dinner and auctions. ParDoes the name Bill Sackter ticipants raise money for Rise sound familiar? You might programs. FFI: 763-792-2415 know it because The Arc of Where Will We Live? summit Minnesota and The Arc of the Arc Greater Twin Cities in- United States both present anvites people with intellectual nual Bill Sackter self-advoand developmental disabili- cacy awards, to honor a selfties, family members and the advocate who is living sucpublic to a free housing policy cessfully and contributing to summit addressing one of his/her community. You might Bill Sackter today’s biggest challenges for also think of the award-winpeople with disabilities. Where ning 1981 made for TV movie fifties, Sackter, who had a deWill We Live? is noon-5 p.m. “Bill,” starring Mickey velopmental disability, was Monday, June 22, at Amherst Rooney and Dennis Quaid, released from a state instituH. Wilder Foundation, 451 written by Barry Morrow. tion where he had lived his Lexington Parkway N., St. Paul. Morrow later received an entire life. He got a job as a Featured speaker is Bobby Academy Award for writing dishwasher at the Minikahda Club and met Barry Morrow Silverstein, Director, Center for “Rain Man.” The Bill Sackter story has through Morrow’s girlfriend the Study and Advancement A Friend - cont. on p. 15 its roots in Minneapolis. In his of Disability Policy. The free event is sponsored by the Minnesota Governor’s Council on Developmental Disabilities. Preregister. FFI: www.arcgreater twincities.org or 952-920-0855
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Radio Talking Book • May 2009 Radio Talking Book DVD Release Parties: St. Cloud, Fergus Falls, Rochester A documentary on the history of Minnesota Talking Book is in DVD format. Throughout 2009, the Communication Center will host DVD release parties around the state. There are plans for a St. Cloud party on May 20. Call for details. At 2-4 p.m. Sat. May 30, there will be a party at Bethlehem Lutheran Church, 102 West Junius Avenue, Fergus Falls. At 1-3 p.m. Sat., June 6, there will be a party at Charter House, 211 2nd St. NW, Rochester. Each gathering will have light refreshments and a short program, as well as a viewing of the DVD. Preregistration is encouraged. FFI: Ed Lecher at 651-642-0887, 1-800-652-9000. Books Available Through Faribault Normally, all books broadcast on the Minnesota Radio Talking Book Network are available through the Minnesota Braille and Talking Book Library in Faribault. The library is currently experiencing a staffing problem and books are not being duplicated. We will notify you when this is again a possibility. Listen to the Minnesota Radio Talking Book, either live or archived programs from the last week, on the Internet at www.mnssb.org/rtb. Call the staff for your password to the site. Access Press is one of the publications read at 9 p.m. Sundays on the program It Makes a Difference. Chautauqua * Tuesday – Saturday 4 a.m. Musicophilia, Nonfiction by Oliver Sacks, 2007. Music occupies more areas of our brain than language does. There are a few humans who do not respond to music, but there are many more examples of how positive music is. It even aids function for people with some disabilities. Read by Marylyn Burridge. 13 broadcasts. Begins May 12. Past is Prologue * Monday – Friday 9 a.m. Rome 1960, Nonfiction by David Maraniss, 2008. The 1960 Olympics saw major changes from the old nonpolitical amateurism. In the heat of the cold war, every action had significance. Rome’s Olympics also saw the first doping scandal, the first athlete endorsement, and more. Read by Barbara Struyk. 17 broadcasts. Begins May 12.
REGIONAL NEWS -
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doorway, possible conflicts if the person is sitting in the passengers’ seat area and potential noise from the ramp rattling. There is a very reliable and popular in-floor conversion option. This allows for an unobstructed doorway for ambulatory passengers to freely exit the van without deploying the ramp. It also has no space limitations in the passengers’ seat area. They also include a system called Sure Deploy which is a power ramp backup system. This allows the ramp to be powered in or out of the van in the rare occurrence that something was to happen to the normal door and ramp operation. If through this consultant period you have decided that a rear-entry conversion will meet your needs the best, again you will have some options to decide on. They will include a power or manual conversion. If your mobility consultant has done his job correctly the decision about which conversion will work best for you should be an easy choice.
Read by Audray Rees. 15 broadcasts. Began May 4.Point No Point, Fiction by Mary Logue, 2008. Deputy Sheriff Claire Watkins is on a case that is very personal, involving the murder of her boyfriend’s friend’s wife. Her relationship with her boyfriend deteriorates as the case progresses. Read by Nancy Felknor. Six broadcasts. Begins May 25. Off the Shelf * Monday – Friday 10 p.m. Lush Life, Fiction by Richard Price, 2008. Eric Cash is facing the reality that his plans are not going to come to fruition. Then while out with Ike Marcus one night in Manhattan, a kid pulled a gun on them. L - Read by William Stout. 18 broadcasts. Began May 6.
Potpourri * Monday – Friday 2 p.m. Breakfast at Sally’s, Nonfiction by Richard LeMieux, 2008. Once a happily married businessman, living in luxury, conservative Richard LeMieux saw his fortune change overnight. He descended into homelessness, depression and suicide attempts. L - Read by Charlie Boone. 12 broadcasts. Began May 7.
Evening Odyssey * Monday – Friday 11 p.m. Do Travel Writers Go to Hell? Nonfiction by Thomas Kohnstamm, 2008. The travel industry often has a harrowing effect on writers, travelers, and the places themselves. It’s a world of compromising and scandalous situations, racing against an impossible deadline. L - Read by Stevie Ray. 10 broadcasts. Begins May 11. The Bible Salesman, Fiction Choice Reading * Monday – Friday 4 p.m. by Clyde Edgerton, 2008. Preston is a member of a car-theft ring. The Outlander, Fiction by Gil Adamson, 2008. In 1903, a He picks up a hitchhiking young Bible salesman and convinces young woman flees across the West, chased by the brothers of him that Preston is working undercover for the FBI. L - Read the man she has killed, her husband. Responding to the by John Marsicano. Five broadcasts. Begins May 25. primitive fight for life, she retreats deep into the wilderness and the wilds of her own mind. V,L,S - Read by Laura Rohlik. Good Night Owl * Monday – Friday midnight 14 broadcasts. Began May 5. The Likeness. Fiction by Tana French, 2008. Detective Cassie Maddox is shown a dead woman who looks just like her, who PM Report * Monday – Friday 8 p.m. used an alias Cassie once used. Cassie takes on the identity of The Sexual Paradox, Nonfiction by Susan Pinker, 2008. the dead woman to lure the killer, but gets caught up in this Learning and behavioral gaps between girls and boys in the unknown person’s life. L - Read by Leandra Peak. 21 classroom are revered in the workplace. Though women broadcasts. Begins May 12. shine throughout school, men earn more and outnumber women in corporate law, engineering, science and politics. After Midnight * Tuesday – Saturday 1 a.m. L- Read by Ilza Mueller. 14 broadcasts. Begins May 13. The Gargoyle, Fiction by Andrew Davidson, 2008. When the narrator is turned into a monster from horrible burns, he meets Night Journey * Monday – Friday 9 p.m. Marianne who insists they were lovers in medieval Germany. Sister Pelagia and the Black Monk, Fiction by Boris Akunin, As she spins her tales, she nurses him back to health. V,L,S 2008. The monastery of New Ararat is known for its severely Read by Arlan Dohrenburg. 21 broadcasts. Begins May 13. penitent monks, its isolation, and a mental institution. But something is wrong there. Bishop Mitrofanii will not allow *Abbreviations: L- offensive language, Sister Pelagia to visit, so she goes undercover to investigate. V- violence, S- sexual situations
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forced electroshocks. He has had more than 40 treatments. David W. Oaks, director of MindFreedom International said the campaign to help Sandford will continue. “We need to stay vigilant about Ray’s rights, make sure Dr. Knudson quits, and help Ray find a better lead mental health professional pronto.”
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Bookworm * Monday – Friday 11 a.m. The Comforts of a Muddy Saturday, Fiction by Alexander McCall Smith, 2008. Isabel is asked to help a doctor who has been disgraced by allegations of scientific fraud concerning a newly marketed drug. Would a doctor with a stellar reputation make such a simple but grave mistake? Read by Karen Wertz. Seven broadcasts. Began May 4. America America, Fiction by Ethan Canin, 2008. In the early ‘70s, Corey becomes a yard boy on an estate. With the family’s help, he is soon at a private school and an aide for a senator running for president. He finds himself caught up in a complex web of events and relationships. L - Read by John Gunter. Six broadcasts. Begins May 24.
My final thoughts In today’s information age, there is no reason why everyone can’t enjoy all the benefits of a wheelchair-accessible van. As the baby boomer generation ages, more are turning to a lowered floor minivan to transport wheelchairs or scooters. What a wonderful lifestyle these vehicles are providing to thousands of people around the country. I hope that you to take your time, look at all options and find the van that is right for you. Some companies offer lowered floor vans that you can rent. Renting a van allows you to get a loved one out for the day, to transport them to doctors’ appointments, weddings, family reunions or vacations. I would encourage you to contact a certified mobility consultant today. You will be surprised how easy it is to gain the freedom to do the things you have always loved. I hope this information will be helpful as you search for a wheelchair-accessible van. ■ Ron Iverson is the general manager of IMED Mobility, Roseville.
The group’s Ray Campaign planned a protest at the state capitol May 1, after deadline for this issue of Access Press. MindFreedom International is an independent nonprofit coalition of psychiatric survivors and others who advocate for the increased availability of safe, humane and effective care for people who are experiencing psychiatric emergencies and who oppose involuntary treatment. [Source: MindFreedom, Inc.]
First case prosecuted by new unit Ramsey County’s first case of elder abuse prosecuted by a special new County Attorney’s Office unit has ended with a guilty plea. Larry John Bekis, 51, pleaded guilty April 24 to stealing from his mother. Bekis had power of attorney for his mother, who moved from her Lauderdale home to a nursing home three years ago. Bekis stole his mother’s Social Security and pension checks, and he took out a $100,000 reverse mortgage on her home. He also didn’t pay for several months of her care. Ramsey County officials took over the woman’s care. Bekis will serve up to 30 days in jail, according to the Ramsey County Attorney’s Office. The office recently set up the elder abuse section in response to growing crimes of this type. [Source: Pioneer Press]
99 Arrested at ADAPT protest ADAPT, the nation’s largest cross-disability, grassroots disability rights organization, took the fight to include longterm services in Health Care Reform up to Capitol Hill in April. On April 27, Obama administration officials made it clear that the administration was not going to provide leadership on getting long-term services included in health care reform, saying it was up to Congress. “I guess what happened at the White House kind of got us wondering who is leading the country…the President or Congress,” said Bob Kafka, ADAPT Organizer from Austin, Texas. “Sad to say but President Obama gets a “D” on disability rights after his first hundred days. Throughout his campaign and currently on his website he promises to ‘… support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution.’ Many of us who voted for him feel angry and betrayed that he isn’t keeping his promise.” The Community Choice Act (CCA) (S. 683, HB1670), intro-
duced in March 2009 by Sen. Tom Harkin (IA) and Rep. Danny Davis (IL), would remove what is known as the “institutional bias” in Medicaid. Currently, Medicaid pays for older and disabled people to go to nursing homes and institutions, but won’t pay for the same assistance, generally at a lower cost, in a person’s own home. Many states have limited or no home and community-based services with lists that keep people waiting for years in institutions and nursing homes before they have any hope of getting services. After police arrested 99 people from both the House and Senate sides of the Capitol, the remaining 400 ADAPT members went to the Capitol, many spilling out of their wheelchairs and crawling up the Capitol steps to hold an impromptu CCA rally, reminiscent of the famous stair crawl on the day the ADA was passed in 1990. The arrests were the second that week in Washington. D.C. Ninety-one people were also arrested outside of the White House after handcuffing and chaining themselves to the fence to protest Obama’s lack of support for inclusion of long-term services in health care reform. [Source: ADAPT]
Study finds far more people living with paralysis than estimated Roughly one in 50 Americans has some degree of paralysis, and five times more people than doctors thought are living with a spinal-cord injury—nearly 1.3 million—according to a study released last month. It’s a largely hidden population that neither the government nor medical organizations had ever attempted to fully count, and the findings promise to help health authorities understand the scope of need. “Paralysis is not rare,” said Dr. Edwin Trevathan, disabilities chief at the U.S. Centers for Disease Control and Prevention, which helped design the study. “These data demand that we recommit... to help this population.” Those are startling, startling numbers,” said Rep. Jim Langevin, D-R.I., who has a spinal-cord injury himself and urged more investment in not just medical research but transportation, job opportunities and other day-to-day needs of the paralyzed. The report found that overall, almost 5.6 million people have some degree of paralysis due to a variety of neurological problems. How could so many people have been missed? Partly, people are living much longer with paralysis, said CDC’s Trevathan. [Source: Star Tribune] ■
May 10, 2009
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Classifieds More Social Security Disability applicants seek representation by Amanda Boerboom, Allsup The Social Security application process is complicated and difficult to go through. Social Security disability applicants can see benefits when they hire a representative to help them apply, according to the company Allsup, which represents tens of thousands of people in the Social Security Disability Insurance (SSDI) process each year. Allsup is a leading nationwide provider of financial and healthcare related services to people with disabilities. In fact, more people are getting representation, especially at the hearing level (level 3) of the SSDI application process. About 90 percent of all hearings involved representatives in fiscal year 2007, compared with about 84 percent in fiscal year 2004, according to the Social Security Administration. More than 765,000 people are waiting at the hearing level to see if they will be awarded benefits. “Once people quit working because of a disability, it’s important to realize that their situations are not likely to get easier—but rather more complex,” said Ed Swierczek, senior claimant representative. SSDI is a federally mandated insurance program overseen by the Social Security Administration (SSA). SSDI provides monthly benefits to individuals who are under full retirement age (age 65 or older) and who can no longer work because of a disability (injury, illness or condition) that is expected to last for at least 12 months or is terminal. Individuals must have paid FICA taxes to be eligible. The wait for benefits can last from two to four years. The following questions are
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among the most commonly asked about SSDI representation. What are your options if you want to hire representation? Typically, there are two major types of paid SSDI representatives: specialized organizations with multiple representatives and specialists experienced in handling SSDI claims in local communities across the country; and law firms that may or may not have attorneys solely dedicated to SSDI claims. How knowledgeable and experienced is the organization in representing individuals applying for SSDI? Look for a representative who specializes in SSDI and understands the complexities and nuances of the process. Don’t be fooled if a representative tries to impress you with claims of local influence. Will the organization help you file the initial application for SSDI? The myth that you cannot have a representative help you file your initial application for SSDI may stem from the fact that many attorneys only accept SSDI clients after their applications are denied. “Finding help from the beginning can improve your chances of getting approved earlier and cost you less in representative fees as a result,” said Swierczek. What specific activities will the representative undertake on your behalf? It’s important to choose a representative who consistently works the claim on your behalf throughout the process and removes the burden from you. For example, you should ask: • Will you contact my doctors and collect or update medical records for my file independently of the SSA?
Cont. from p.12
Expanding collaboratively to the dementia community, research for My Father’s Bookshelf has been conducted with many care providers, scientists and family members across Minnesota. In rehearsals, the company will continue to work with professionals at the University of Minnesota, including members of Dr. Karen Hsaio Ashe’s lab at the N Bud Grossman Center for Memory Research and Care and Adine Stokes of the Wayne Caron Family Caregiving Center. Post-show discussions with care providers, family members, doctors and scientists will follow most performances. Live Action Set invites members of the community to at-
tend open rehearsals in May and June. Workshops for families, care providers and artists are being offered in June by Kairos Dance, Stuart Pimsler Dance and Theater, and the theater company. Performances, June 18 – 28: Single tickets are priced from $18 to $30, with a limited number of premium tickets available for opening night. Tickets are now on sale through the Guthrie Box Office at 612-3772224, toll-free 877-44-STAGE, 612-225-6244 (Group Sales) and online at www.guthrietheater. org For more information on Live Action Set, visit www. liveactionset.org ■
• Will you regularly query the SSA for status of my claim or confirm my claim file is up-to-date? The SSA’s Disability Determination Service may arrange for you to visit a doctor or compile your medical records, but a representative can ensure the medical evidence is supplied by your treating physician. Does the organization have experience representing someone with your disability? Not all disabilities are alike—the SSA has specific Disability Impairment Criteria for hundreds of specific conditions, from back injuries and arthritis to fibromyalgia and strokes. It’s essential to prepare each case with details and in the language required by the SSA to avoid unnecessary delays, a reduced award or denial of benefits. How does the organization – and who within the organization – will keep you informed on the progress of your claim? Disability applicants should make sure that the representation organization they choose will keep them regularly updated on the progress of their application, including timely notices of deadlines, documents required or scheduled hearings. Sometimes people assume they’ll have regular inperson meetings throughout the duration of their case, Swierczek said. Will you have to attend any hearings? Approximately one-quarter of SSDI cases proceed to the hearing level where there are hearings before judges. However, this might not be necessary if the representative asks for and receives an “on-the-record” decision, where the judge makes a deci-
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sion based on a review of information in the file. It does require that your representative create a well-written brief that provides a thorough, factual record of your claim. What is the organization’s success rate? No organization has a 100 percent track record, but consumers should look for a representative with a high success rate in gaining SSDI benefits for its clients. This indicates the representative not only can deliver the desired result, but also likely has strong credibility in the industry. How much faster can the organization help you win your award? There is no guaranteed timeline. External factors, including the growing backlog at the SSA in processing claims, can affect the timing. But a representative should know on average how long it takes their clients to get through the various stages of the SSDI process. What does it cost? The SSA determines the maximum fee that any organization can charge for SSDI representation. Currently, it is 25 percent of the retroactive dollar amount awarded, not to exceed $5,300. (Note: The SSA has approved a fee-cap increase to $6,000 for SSDI awards effective June 22, 2009.) Those who are approved quickly at the application level and receive no retroactive award typically pay much less. You should not pay a fee if you don’t receive your SSDI award. However, ask a representative if they charge for costs in addition to the representation fee, such as travel or medical records. The preceding information was submitted by Allsup. ■
Cont. from p. 13
who was a waitress at the club. It was the start of a lifelong friendship. Filmmaker Lane Wyrick has taken photographs and video footage Morrow shot over several years and combined them with interviews to tell Bill Sackter’s story. The result is a powerful documentary about Sackter, a person who helped change society for the better and who has become a folk hero for the disability community. The film has its Twin Cities premiere on Monday, June 8 at the Riverview Theater, 3800 42nd Ave. S., Minneapolis. Wyrick and Morrow will be on hand to talk about Bill Sackter and the making of the documentary. The Arc of Min-
nesota and Arc Greater Twin Cities are assisting Wyrick in promoting the film. Arc Greater Twin Cities board member Steve Hayes saw the film last fall at The Arc of the United States national convention. “The Bill Sackter Story is an inspiring tale of a life-long friendship,” he said. “What I like is that the story is about friendship, not disability. Two men meet and befriend each other. Each is his own person and follows his own path, yet they have a love and a bond that keeps them together throughout life. It is not a story of pity…it is a story of inspiration.” For more information, visit www.billsackter.com. ■
Reach 11,000 Active, Interested Readers with Access Press Classifieds. $13 up to 12 words, 60¢/word thereafter. Must be prepaid. Mail with check to: Access Press, 1821 University Ave W, #104S, St. Paul, MN 55104 651-644-2133 FOR RENT Holmes-Greenway Housing: Oak Park Village: One-bedOne- and two-bedroom wheel- room wheelchair-accessible chair-accessible apartments. apartments. Section 8 subsiSection 8 subsidized. Conve- dized. Convenient St. Louis nient SE Minneapolis loca- Park location. Call 952-935tion. Call 612-378-0331 for 9125 for availability informaavailability information. Equal tion. Equal Opportunity Housing. Opportunity Housing. Lewis Park Apartments: Barrier-free housing with wheelchair users in mind. Section 8 subsidized. One- and two-bedroom units. For more information on availability call 651-488-9923. St. Paul, MN. Equal Opportunity Housing.
Seward Square Apartments: We are currently accepting applications for our waiting list for barrier-free housing, in Minneapolis, that is federally subsidized. For an application, please call 612-338-2680. Equal Opportunity Housing.
PERFORM - Cont. from p. 12 Time and Tide: The Changing Art of the Asmat of New Guinea Mpls. Institute of Arts, 2400 Third Ave. S., Mpls. ASL: Sun. June 7, 1 p.m. Tour begins by the information desk in the museum lobby. Phone: 612-8703131 or TTY 612-870-3132; E-mail: dhegstrom@artsmia. org Web: www.arts mia.org Ramona Quimby Through June 7 Children’s Theatre Company, 2400 3rd Ave. S., Mpls. AD & ASL: Fri., May 22, 7:30 p.m. Tix: Mention VSA Offer for $14 tickets (reg. $14-27); Phone: 612-874-0400 Web: www.childrenstheatre.org
pin Ave. S., Mpls. AD & ASL: Sun., June 21, 1 p.m. (AD if requested in advance) Tix: $2676; Phone: 612-373-5639 or 5609; hotline 612-373-5650; TTY 612-373-5655; E-mail: accessible@orpheum. com Web: www.hennepinthe atredistrict.org/guestservices/ aslad/ Singin’ in the Rain June 16-28 Ordway Center for the Performing Arts, 345 Washington, St. Paul. ASL & AD: Sat., June 27, 2 p.m. Tix/Phone: 651-224-4222, TTY 651-2823099; Web: www.ordway.org/ accessibility
My Father’s Bookshelf Tiny Kushner: June 18-28 An Evening of Short Plays See page12 for details. Through June 7 ■ Guthrie Theater, Dowling Studio, 818 2 nd St. S., Mpls. Captioning: Fri., May 29, 7:30 p.m. AD & ASL: Sun., June 7, 1 p.m. Tix: Reduced to $20 (reg. $26-30); Phone: 612377-2224, TTY 612-377-6626 Web: www.guthriethea ter.org/accessibility Hedda Gabler Through June 12 Commonweal Theatre, 208 Parkway Ave. N., Lanesboro. ASL: Sun., May 3, 1:30 p.m. Tix: Half price (reg. $25, student $12), Phone: 507-467-2525, 800-6577025, E-mail: tickets@common wealtheatre.org Web: www. commonwealtheatre.org Robots vs. Fake Robots June 12-27 Walking Shadow Theatre Company at Cedar Riverside People’s Center, 425 20th Ave. S. Mpls. ASL & AD: Fri., June 19, 7:30 p.m. Tix: Reduced to $7 (reg. $16, $14 student/senior); Phone: 612-375-0300; Web: www.walkingshadow company.org A Chorus Line June 16-21 Touring company at Historic Orpheum Theatre, 910 Henne-
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May 10, 2009
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