August 1997 Edition - Access Press

Social Security, Part 3 of 3

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Volume 8, Number '8

World Come To Minnesota - Page 9

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RESOURCES

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"Whatpeople say behind your back is your standing in the community.

- Edgar Watson Howe

August 10,1997

BIRTHDAY Americans With Disabilities Act

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by Doug Anderson

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n July 26, the Ameri- The hope of people with discans with Disabilities abilities was that this law Act (ADA) will celebrate the would allow them an equal seventhanniversaryof its pas- opportunity to participateand sage. This monumentalpiece competein the mainstream of ofcivilrightslegislationmade American life. The law it unlawful for businesses and doesn't offer preferential state and local governments treatment or impose affirmato discriminateon the basis of tive action quotas. It simply disability in hiringorservi~es--requires that people with dis-

ment and independence is realized."

A Hams Poll conducted in 1995,revealed that more than 90% of the 400 executives and managers that were interviewed supporttheprovisions of the ADA that prohibit discrimination in employment

. mem!t o

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r p in a~mw ~ frwrataj that srereby buildifig becawidit was de- myths &oui &d&l& signedinanina~cesibbman_~ - in i@tudes that create mow ney, this also would be a viaaUy ,-b$zan of the ADA. - -

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under the ADA while 14%' said the level increased "a

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The fear of busi lots of money. They afitici- and v pated expensive legal fees, latd to their appearance, it is expensiveequipment,and the obvious that the ADA is help expense of lost pr~ducii~ity.ing America change its attitude regarding p o p k .with To w h a t w h a m h h ~ disabilities.", says Robin A. , and f - _ a ~ ~ o r : i a & x $ ~ ~Jones, Director of the Great ADA been d i d yym- b k e s Djs&ility and Business years later? A reportifu,m~ ' 4~ ~'ac ~ i i kW m e ter ~ Census Bureau fl?yded %at (~&D&A@. ckm&is ?

ISne'of the- very notable as- scheduledonlyhmfbmmis- the employment of peopk *&&.% p& of the Courage Center can create agreatmmmtof . with severe disslbiktiw >in- mmt of $d&m - National Rkrsidence is that they offer . stress. Becky Mshnnan is creased from 23.3% in 1991 Institute on Diability and to 26.1% in 1994,,This.repre- Human D e v e l ~ ~ to ~ n t v k w e ~ r t r a s m b m mp e n t w h rest~ prow& b ia&mwl& lilce lxcnpafiondand physi- het*y timetime* id,"%t .sepss ashamwe clf 27% aece and technical assistance cdfheMlp&sadwcho1ogi- wwld b nice to break it up',; an the ADA to businesses, ca4 comsdtng. Most of the .bit.I m ~ u l e fortbrapy d government age~eies,and residents interviewed were &m1:00 to 4:00 straight in ing. people witb d i s a h i b and wry w&h%h~ thctapy ~&ea&mwm&andit6anbe f?ard Ste*~ M i l k #Garmla- - t h e i r ; ~ i w c ~ ~ they d v d , but were dis- verytirkg." sioner at the u.5.I h - tions. Th.y artt? pait d the C O U T by ~ the@@cultiesid making It to their sessions. 'fizcshortggeefnmiqg~sis- ploywent Opportttmity CJom- Insritvte on Bkabifity and Resident, Maureen Prang- ,taats~san indnstry wide p b - mission (EEOC), which is Human Development at The hofer, documenttsl30bmpy &&I affecting hospitals and charged with enforcing the . University d Illinois at Chisessions in 6 manths which s w i n g homes as well. Be- employmentprovisions of the she missed mainly hmawje .eatwe of the fantiliar health ADA, said, '7 am p l d to the RAs were too b y to as- a u dilemmas ~ of insurance see that we have moved for- For more information about sist her out of bed in *. &quirements &d poor gov- ward & a corintsy in employ- how theADA applies to your @ b rmideats amplained p e n t funding, nursing as- ing people with disabilities. buskssorpersoarzl situation, of s i m i l a r s c e h , zkds~nne are often ubdmpaid. Althoiigh these tkegebers are yoQ can acms$ rhi free ser-ed&Id~ i&a msult, Health organiza- emur@ng, weclearly have vices off& by GLDBTAC tbat they anby m i w e h&isxmne-'1&to mff a l o n g w a y ~ g o ~ A D A ' sby ealfirtg them at 1-808-949pies in the afternoons. the facilities with mrsing vi~diaclo~on,srari#wluer-~ v 7 T i Y . m

Problems At The Residence Residents V %'_

by Jane Wheeler '

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need to provide an en- Canter is known to be one of vimnment that is conducive the@ie;rrehabilitationcento k i r reputation." James tdh the nation. Many redShelton, a resident .at the de- chaw Center courage center ~esidencein because oPms rquhtia. It Golden Valley, made this is not just a nursing home statementabout the highly re where clfents am i n W to s p e c ~ h & 1 ~ nremain ~ . for m extended p Interviews with various re&- id of time. It speci@czllly dents at the fasility combo- of@stransitional therapy that catedthaf~klton'sstatement is&tedatmablingtheresiexpressed a; c m n t general dent to lea* thcmager and to feeling about the w i c e pro- move into mor6 independent viddathe%enter.ksi&nts howingsituations, are discouragedby many problems they havkexperienced at The major concern that tha the residence, which include residents expressed was sbstt short sta'fing and communi- reswent assistants ( U s ) cation problems among the se&xi upderstdkd at rhe .EaCiBt$ RAs are certified various d e p ~ n t shmi, dents and the residqt asis- masring hs&tamB who protants. vide theeveryby livingcrues thathresi-*, such The residents feel most dm- as tmmders out crf_W-and cwraned because Camage assistiagd However, havin~&repies

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August 10,1997

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Access P

nnouncing The Disability Institute

by Wendy Brower isability rights activists The mission of The Disabil- communities that are fully The Disability Institute will:

disabilities and a catalyst on issues through education, re- abilities, opinion makers and policy makers and the media disability issues. search and advocacy. The community leaders.

Establish a forum for the exchange of ideas by sponsoring conferences, symposia and public policy forums

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Create accurate public awareness and understanding of people with diiabilibig by conducting research

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and wtt, he ie a two&me Peabody Award and Emmy h s c d whmex. His book

will

for

dence

be

9th & Hennepin

Tuesday, Sept. 16 7:00 PM Presentation8:00 PM Party Reception

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Tickets

$10 ($5 Limited Income) Presentation $40 Presentation & Party Reception Sign Language Inferpmted

Disability Institute will help society define and conceptualize disability in a new way.

Our experience tells us that disability is not only amedical problem and deficiency that rests within an individual that must be cured, normalized or rehabilitated. We know there are socio-political aspects to disability. Helping others un-

ferent grant programs. Ten grants, eight of $150 and two of $75, were made in the Emerging Artists program an? six grants of $600, were made in the Artist Recognitisn program. Funding for theArtist Recognition proVery Special Arts Minnesota gram was provided by the presented awards in two dif- JeromeFoundationof St. Paul.

sale.

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high unemploymentof people with disabilities. Currently,

Very Special Arts Minnesota (VSAMN) is pleased to announce the names of Mihne sotans with disabilities who have m ~ l t l yreceived monetary grants for their efforts and activities in the arts.

M o v b g M & ~ W ~ W -

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other organizations

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890-1 099

Wheelchair Acceselble

7WIS EVENT IS MADE POSSIBLE WITH OENEFIOUS SUPPORT FROM

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ACCESSPRESS Co-FoundertPublisher( l ! B O - l...................................... ~ ......................... in. k Smith,Jr. I

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To officially launch The Disability Institute, the public is invited to "An Evening with John Hockenberry. "Hockenberry is a political analyst and veteran news reporter who has used a wheelchair for twenty years. He is known for his outspoken, yet poignant, style and entertaining wit. He is an

Awards TO Artist

At The Exciting New

c h t r s , andDedm&me

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EditsrlPublishertCo-Fader .L Charles F. Smith Cartoonist Scott Adam Production , o n Images,'Ellen Houghton Staff Writers & Editorial Assistants cmdy Bordeaux, Dawn Doering & Jeff N y p r d ACCESS PRESS is a monthly tabloid newspaper published for persons with disabilities b Access Press, Ud. Circulation is 10,000, distributed the 10. of each month through more than 130rocations statewide. Approximately 650 copies are mailed directly to political, business, institutionaland civic leaders. Subscriptionsare available for $lS/yr.

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

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FREE PUBLICATION

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The Connector

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Advertising and editorial deadlines are the 30th ofthe month preceding publication; special scheduling available for camera-ready art.

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

Inquiries should be directed to: ACCESS PRESS 1821 University Ave. W. Suite 185N St. Paul, Minnesota 55104 (612) 644-2 133 Fax (612) 6442136

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Artist Recognition program'

Tara Arlene Innmon, Mpls Sculpture James Livingston, Mpls Poetry Yvonne Klocek, St. Paul Photography Helene Oppenheimer,Woodbury - Sculpture Audrey Lee Falk, Willmar Painting Stephanie Dawn, Bernidji Music performance, vocal

MINNESOTA STATE COUNCIL ON DISABILITY

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Paid advertising is available at rates rangin from $14 to $18lcolumn inch, depending on size and ~ 1 20 words. frequency. Classified ads are $8.00. plus 3 B c e n ~ v oover

The selected grantees include:

A quarterly newsletter by the Council providing information on disabilty issues. Subscribe today!

Call 612-296-6785, V/TTY in the Twin City Metro Area or toll

IIIfree,l-800-945-8913V/TI'Y"

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Michael Dieter, Minnatnka carol ~ o u g h~, e m i d j i How Ellsworth, St. Paul ~i~ Pechwk, Lake Elmo Jamie Graham, Chisholm Kevin Rosser, St. Paul Sunny Steinhetz, Mounds Donna Hahn, St. Paul

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SP.h svObaln~v mAead For infomation regarding the grantprograms orotherVSMN ,ices md sclivities, con-

(VATY) tsct Craigor Dunn 1-800-801-3883 at 332-3888

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COURAGE The therapy included in the Courage Center's rehabilitation program adds acomplication to the schedule of the RAs that nursing assistants in nursing homes do not often encounter. To see results, therapists often recommend to the residents that they practice on a daily basis. To practice residents often need assistance from an RA, but with an RAs busy schedule finding time can be difficult. Kathie Nichols, the Director of Nursing at Courage Center, stressed that residents are allowed and encouraged to schedule time with an RA for daily practice. She explained that this self-scheduling can promote a resident's independence. The residents interviewed stated that sincethey see first hand the overwork of the RAs, they are tentative about asking for further individual time and have found it almost impossible to schedule time.

When Ranghofer did request extra time to practiceher therapies, she said she felt chastised. and claimed that her request for practice time was

IN BRIEF.

cont from p. 1 pool staff is in a rehabilitation format. They were concerned that the temporary RAs were unfamiliar with the Courage Centers unique structure and goal. Most nursing assistants are trained for a nursing home setting that includes a limited amount of rehabilitation, and they are often unaware of the abilities and limitations of people with physical disabilities. Theresidents interviewed believed more accidents occurred when temporary sbff were working because they are not adequately trained in procedures at Courage Center.

Nichols admitsthat sometimes they must resort to using pool staff, but she said they first try to fill absent RA spaces with regular Courage Center staff.

She said, "always to have experienced staff is our first response." When using pool staff they work exclusively with a few agencies they trust.

She said, "Idon'tdeal with the 60 agencies in town. I work with a handful ofthem that we have developed relationships with." Nichols stressed that thev<reauest . tem~orarvstaff that have previously worked

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August 10,1997

Access Press ,

theirconcernsto ifthey wished to express their views.

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1st. Paul Committee Vacancv w

Mohrman, another resident, said that among the residents there is a general apathy in voicing concerns. Pranghofer's experience might explain why. She had moved systematicallythrough the hierarchy expressing her complaints for months without any results. It wasn'tuntil recently when she saw a few changes.

The Mayor's advisory committeeforpeople withdisabilities has an opening for membership. The committee advises the Mayor and City Council on problems, issues, and opportunities facing

people with disabilities. The For mare information contact committeespecificallyfocuses Alberto Quintela at 266-8529 on issues related to employ- or access the City's web site ment, public educationand ac- at: www.stpaul.gov/mayorl cessibility. The committee committeeinfo. meets on the 3rd Tuesday of themonth,from6:00-8:OOpm.

I~dvancedADA Seminar

The Great Lakes Disability and Business Technical Assistance Center (GLDBTAC) will provide advanced ADA training on Title I dealing The Courage Center adminiswith Employment provisions tration did finally respond in May of this year. Most of the changes which have occurred at the Residence have been Calliope Women's Chorus is due to a committee called the holding auditions for Soprano I & 11, and Alto I & 11, on Aug. Service Delivery Task Force. I 19,6:30-9:00pm and August This task forcewas made up of 23, 10:OOam - 1:00pm. Calmembers of various therapy departments, administrators and two residents. Its recomT h e new equipment "Permendations do address some sonal Reader" scans books, of the communication con- magazines, photographs, cerns the residents have ex- documents and even three-dipressed. mensional obiects. for -people -

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of the Americans with Disabilities Act. This seminar is designed to enhance the skills of the seasoned human resource professionals. The workshop will be held on September 8-9.

1997 at the Rarnada Plaza Hotel in Minnetonka. For additional information, contact Dave Larson at (612) 6032015, TTY 603-2001.

women's Chorus Auditions ' liope has an accessibility policy that requires spaces used for auditions, rehearsals and concerts to be wheelchair accessible, and they provide

materials to members in alternative formatswhen necessary.

To schedule an audition time, leave a message on Calliope's voice mail, 649-4732.

"Personal Reader" At St. Paul Library

help with the scheduling mistakes and improve communication among the departments.. thev hired a new staff member who would partly be

Library, 1831 Marshall Avenue (Fairview & Marshall), St. Paul. Another "Personal Reader" is located at theHi hland Park Library.

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Volunteers are needed for two and Friendly Visitor program new programs at the Multiple matches a volunteer for home SclerosisSociet~.Tell-A-Peervisits. Both momams are for isatelephonesupportprogram and by peopie with Multiple

Sclerosis. If more inform new programs, call 870-1500 or 1-800-582-5296.

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When Courage Center brings ' in temporary staff, residents . claimed to have greater prob' lems. Health care facilities often must resort to using i "pool" staff, staff provided by - temporary agencies, when a nursing aide is ill or for some r ,:. other reason staffing is short.

The residents expressed how particularly problematic using

In May the State Department with the Director of Nursing of Health came to C m g e and the Program Director to Center to conduct an annual discuss issues that eondern evaluation. The departinent them. gave a good rating and found only one deficiency. that was When this f o ~ m was tried in not related to understaffing. the past, it was canceled beHowever, the state used a rat- cause of lack of participation, ing system that was designed but Courage Center administo evaluate nursing homes. trators have felt that the recent Because there is no state li- attempt at the forum has been censing for rehabilitationcen- successful. Karen Casper, ters, the Courage Center Resi- Resident Program Director dence is licensed as a nursing said, "there hwe been two spehome. Even though the resi- cific incidences where residence exceeded the recom- dents have said in the course mended staffing requirements of the meetings they really for nursing homes, without think this has been a good proestablished recommendations cess for them to bring up isit is difficult to determine ,sues and search forsolutions." whether they are properly staffed for a rehabilitation set- Unfortunately, many of the ting. residents interviewedwere either unaware that the resident Beyond the staffing concerns, forums were taking place or the residents interviewed also too discouraged to particiobservedaproblem withcom- pate. A few of the residents munication at thecenter. Resi- who did participate did not dents claimed that sometimes feel their concerns were taken a therapy session was missed seriously or they saw no real ' because theincorrect time was action taken. noted on the resident's schedule. Also many residents were The residents interviewedwere unsure who they could direct Courage - cant. on p. 7

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~eCOrn~n~ Committed to "Qualityw semce, not "Quantity* Ethical, Honest, Pmfessional

24 hour Emergency Contact Person

College students studying in the Health Care field Energetic, Dependable, Honest Individuals.

casiawlnparfrom his sister* Gayle

Willing to k!!arn and adapt 0 to each client's needs SPECIALIZED TRANSPORTATION

529-5019

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C ~ ~ MEDICAL E ASSISTANCE PROVIDER

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e C a r e -~rovidigA ~ b h e qdity r personal care ~ftendAnt." H

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Saunders (Public Relations r mat or Client dnce 1987), about what peopl~ expact ~ aIgarsonal I c~re provider and better ways te serve clients.

lllf you need 'Qualityw staffing designed to fit your meeds,

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reak Your Own Barriers Event

of their problems were due to the overwork of the RAs and not a reflection on the regular staffs quality. Overworked RAs and understaffing can result in a snowball effect where staffmorale drops. Some residents complained that call lights were not answered or that the wait for service was excessive, which can be very dangerous in the case of an emergency. Also, a drop in morale causes RA's to leave the facility for otherjobs which means a constant stream of ., inexperienced staff. How- ever, Courage Center adrnin". istrators claim that their turn=*over rate for RAs is lower than - the national average.

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VO1unteer~Needed

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with visual impairments, it magnifies the image on a fullcolor,high-contrastelectronic screen. This new equipmentis located at the Meniarn Park

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Consumers Perceive Stigma as the Educationforthe Handipassed with overwhelming bipartisan support in both the Senate and the House of Representatives, should help to ensure that "no child is denied his or her civil right to obtain a quality education," according to Assistant Secretary of

stigma and discrimination.

Disabled & Proud,

Most respondents had experienced serious mental illness (BY-polar disorder 25%.

Schizophrenia 19%; and Ma-

commentsaboutmental illness (80% of respondents), seeing or hearing hurtful things in the mass media (77%), and worrying about being viewed unfavorably by others (75%).

on job or other applications.

Discrimimation's Effects Nevertheless, 32% reported they had the experience of be-

dents reported often being when their status as a mental where we finally put an end to the divisive, false argument that something for your child means something less for my

(61%). Inaddition,39% were vised to lower their expecta- almost one in five (19%) reported that findinghousingwas hindered by their psychiatric history.

Significant numbers of respondents also indicated that insurance was a problem for them. Almost one third (30%) reported having been turned down for health insw: ance coverage on the basis of (heir mental health treatment history, some citing "pre-existingcondition"ru1es as apar-

Not surprisingly, given these experiences, respondents overwhelmingly indicated that they have attempted to, conceal their illnesses from others. As noted previously,70% said they avoid indicating on written applications that they are mental health consumets for fear that information will be used against them. Even more reported that they avoid telling others outside their immediate families about their illnesses, sometimes (27%), often (21% or very often

Exploring new territory. l.Mng with a disability can be AT,U,S JVEST, we recognize h e fnrstrati'ng at times. But the biggest . ' 'i;&nab;ke of leading an independent challenge is trying to get other people .lReStyle. 'we tfy to make the world to realizghow much you can do and the people you love more instead of focusing on what you con% , ,acaasibk by providing the best telecmmu~cationsproducts and You've discovered new strengths and gained insight by overcoming barriers. sewices available anywhere. We You have developed a unique and believe everything should be within highly individual perspective. reach. We will help you find the-way.

Overall,results indicatestigma is very much a part of the lives of those with mental illnesses. They experience negative public comments and reactions, encounter discrimination in jobs and housing, and conceal their psychiatric histories to avoid feared reactions. Stigma remains a vexing and painful reality to a great many people with mental illnesses.

(This is a summary of a study conducted by George Mason University on stigma as perceived by mental health consumers.) Reprinted from the Mental IllnessAlliance's newsletter, The Advocate,July/August 1997, with permission.

Access Press

August 10,1997

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actlywhatIalwayswanted.0r donning a shirt. Most home touchcouldbecommunicated. Studies have shown infants was it? Why did her care al- health &s refuse to touch us I miss that T<;.,- ,

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by June Price, editor of Living S &

tion.

she gave mwauo-d;atb,.h.+h

metal; we

while chatting with afriend 00 Personally, I have always her cordless pb~ne!It wasn't

Reliaion & Disability

by Barbara Gill

September 14 at 5:00 p.m. bdbqpdb Hilton Hotel Now, more thgn ever,may be

grade we were already feeling the dilemma presented by sin and freewill. Ourchildminds, contemplating the life-time of unavoidablefailures,struggle,

the original meaning of martyr: "mindful witness." To be mindful is to be aware. To witness is to tell what you saw and what y ou know. The early

constantly bring me to cornpromises. I encouragemy son to sign up for adaptive soccer - asegregated program, something I don't believe in b e

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aninclusivesw~,andmin& fully to live the change: we want to see in fie world.

Barbara Gillisa writer, attorEbr moa infondon dl Gnuage Gntcr at (612) 520-0545

more, at least not in our placid They w e r e ~ ' t c t oo t Wisconsin town. fourth grade fantasy an instant ticket to heaven. They Today not many of us would were committed to the witaspire to be martyrs -the word nessing - to telling their truth. lhas come to mean a foolish Mahatma Ghandi said: "You victim, a silent-long-sufferer. must be the change you want kA martyr is the ultimate co- to see in the world." The mardependent, the one who gives tyrs were committed to being up her life for the cause. I the change. ..-w as the mother of a son with Down syndromeI've been Eighteen years of life with my told once too often that I must son has led me to want to see a be a saint to do what I do. No change in the world, a change thanks. I don't want to be a summed up in the word inclusaint, and certainly not a mar- sion. To me inclusion in not tyr. I like being an ordinary just one of an "array of opperson. Besides I know, that tions," any one of which is kind of martyrdom doesn't acceptable. Inclusionisa word serve a useful end. One of my signaling a fundamental value irreve~entfriends who hashad that people should not be kept a long and difficult struggle separate from society at large with her school district over to get their needs met. Inclum e r child's education some- sion stands for the proposition

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erty over employmentbecause I he cannot afford to give up HOUSING PERSONAL CARE SERVICES Medicaidbenefits. Anagency talks inclusion, but persists in ~ ~ ~ & b l ~ offers ane two bedroom segregated programming, beapartments for individuals with physical disabilities.

We have housing in cause to change the status quo are% StBrainerd, Grand the Twin Cities seems too hard and too scary.

Witnessing to radical change will always'cany costs. Each one of us will make personal decisions about what costs we can bearswhat compromises we will or will not make. The current political climate, with its realand promised cost cuts, puts tremendous pressure on all of us to compromise or modify our beliefs and increasestherisksoflivhg them.

Some might feel that the wise strategyis to rebeat: don5t keep demanding a whole loaf when the half you have is in jeop

Hibbing, Austin, Marshall, Willmar, and ~ul6th.-"' ,,, . . # The apartments are fully wheelchair accessible and each building has a central laundry room, large community room, S'ecurZdentry and an on-site

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AS1 also offers shared personal care services 24 hours a day, at most locations, for adults with a physical disability and/or traumatic brain injury who qualify for Medical Assistance.

For more informationcall (612)645-7271or (800) 466-7722. For services I or housing call Leigh, for employment as a personal care attendant call Sean or Courtney.

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Part 3 in a 3-Pan Series

The first two parts of this series pointed out some basic factsaboutthesocial Security program in the 1990s,and discussed the nature of the attack against the program, which is commonly known as "privatization" (See the June and July issues of ACCESS PRESS). While the effort to privatize the system poses a threat to the security of all Americans, the current proposal poses a particular threat to people with disabilities.

This final installment is all about that threat.

This past January, the federal government issued the "Report of the 1994-1996 Advisory Council on Social Security". In the preface to this report, the Council stated that it had decided not to focus its attention on the Disability Insurance (DI) program at this time, choosing instead to fo-

Access Pres

D h b W y Ben& Cuk Why? Why does the PSA plan include a massive cut in insurance benefits for people with disabilities? It's actually hard to tell, because they describe the proposal so briefly, but it has to do with raising the retirementage.

The PSA proposal calls for increasing the nonnal retirement age from 65 to 67 by the year 201 1, and thereafter automatically increasingitbased on average life expectancy.

The age for early retirement under Social Security would rise, too. Right now, if you choose to retire "early" (that is, at age 62 instead of age 65), your monthly Social Security check will be smaller than it would be if you had waited until age 65. This is because the average life span of 75 years would get you ten years of benefits if you retire at 65, and 13years of benefits if you retire at 62, so the smaller

such thatawmkercannotdraw larger benefits under the disability program than he or she could draw under the retirementprogram. Unfortunately, to avoid arbitrary notches in benefit levels, this change in the formula affecting older workers had to affect workers of all ages."

Their regrets: "Certainly, we would have preferred toeliminate subsidiesfor olderpeople choosing disability benefits over retirement benefits without reducing protection for younger people with disabilities, many of whom are seriously disabled and have little choice about working. There was no simple answer to this problem, however..."

Their bottom line: "The DI program has been growing very rapidly in recent years and failing to deal with this problem, in our view, would have been fiscally irrespon-

They try to make four points less, when one reads the sumhere, correspondingtoeach of mary of the PSA (Personal What does this have to do with the above paragraphs as folSecurity Accounts) plan, cuttingdisabilitybenefits?It's lows: 1) Lots of people are

privatizers are right, then we would expect to see a big jump in the number of people receiving disability awards when they get to age 62 (because it's a better deal than early retirement).

port there is much talk of "incentives'T: incentives to work andlor to apply for benefits. Withoutexception, when they refer to incentives, they mean financial incentives. The assumption throughout is that people are lazy, and will lie, cheat, and steal in order to get more money for less work. Of course this is not true for most people, and it is a terrible assumption upon which to build publicpolicy. Oneofthethings thP makes human life "not simple"isthatpp1e-tiever motivated by asing1e"incentive". Dignity, self-worth, responsibility,ethics-all of these intangible but fundamentally important things contributeto why people work and why peoplefightagdnstincredible o4ds to "keep on keeping on."

That's exactly what we do not see. In fact, the number of new disability beneficiaries actually goes down between age 61 and 62, and continues going down after that. As the National Academy of Social Insurance put it in a 1996 reportcommissionedbytheU.S. House Ways andMeansCamm i t b , "...the early retirement reduction does not seem to pose a powerful incentive for older workers to seek and receive disability rather than early retirement benefits."

That's understating it; it doesn't appear to pose any in- Now for the final point: Discentive at all. ability Insurance costs are "growing very rapidly". Itjust An "incentive" in this context ain't true. While it is true that is something which would the cost of the program is inmotivate people to try and creasing, it hasn't increased cheat the system. But even if very rapidly since the 1990multiWea w m to try, how 1991 recession. 8ince 1992, many would get away with it? it's been growing much more Anyone who has gone through slowly. the process of applying for

wages andcutsin benefits, and the numerous economic and social barriersthatpeople with disabilities face when they try to enter the work force, all contribute to raising the costs of public support programs.

Finally. we need to remember that simply working to prevent a 30% cut (or any cut) in Disability Insurance benefits is not enough. Even at the current levels, the United States lags far behind many other ihdustrialized countries in how it deals with people with disabilities. The United Kingdom and Gennany spend more than twice as much on public disability programs as the United States (& a percentage of their economy).

Swedenspends more than four times as much. In addition, other countries emphasizeand fund programs to provide r e habilitationdjobsfdpeople with disabilities. As theprichest country in the world, we should be setting the standard in this area We are not.

1

The conservative agenda far privatizing Social Security is based, in part, on the idea h t

Securitynormal retirement age have to take a 30% cut to deal cations at any age are denied at there is more money to pay DI ever been. rises, as it does under our with it; 3) There is no simple rates approaching 8096, and bemefits. Sotheself-financing "A disability and young plan, ...the penalty for draw- answer, and we won't even multipleappealsarethenorm, aspect of the program dimin- As the debate about the following sentence:

- in the case of disability) would

.

have to file for disability benalso be part of the central gov- efits: under present law, a 5 ernment system." [emphasis worker who can qualify for added; parentheses in origi- disability benefits at age 62 can draw a full, unreduced benefit whereas the worker Why do they propose cutting who chooses to retire at 62 DI benefits by thirty per cent? suffers a 20 percent benefit And why is such amajor point reduction." in parentheses? Is it considered that unimwrtant?

Their solution: "...ourproposal applies a limit to DI benefits

Let's look at each one.

First off, are lots of people ripping off the system right now?

Apparently not. The obvious thing to do to find thisout is to look at how many disability benefit awards are made at age 62, which is the firstyearearly retirement is possible. If the

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Now, the second point: The fraud problem is SO huge that the 3.5 million DI beneficiaries whoare under age 62must take a 30% cut in order to stop it. We havejust noted the lack of evidence that there is any ipificant fraud at all. But even if every single one of the DI beneficiaries aged 62-64 wereacrook,thosepeopleare only about 11%of thetotal DI recipients. That would be about $900 million in thud.

And they are talking about cutting $10 billion in legitimate benefits in order to deal with the imagined problem. It doesn't add up.

Point 3: "There [is] no simple answer to this problem..."

Again, What problem? But there is a point to be made here, which is that the lives of real people in the real world are not simple. Everyone's life is complicated and important, and the case could be made that the lives of people withdisabilitiesareevenmore complicated than the average.

So, on moral grounds,the idea that the lack of a simple answer to this (imagined) prob lem necessitates subjecting everyone to a massive cut just doesn't make the grade.

Throughout the Council's re-

Also, more women are working, and working enoughhours to qualify for DI benefits. So, instead of receiving SSI (a means-tested program paid for out of general revenues) they receive SSDI, which is paid for by payroll taxes set aside forthatpurpose. Also, we are getting better at recognizing and diagnwingdisablingconditions, so more people are qualifyingforbeaefits,as they should.

the myth of scarcity shape that debate. Instead,we may recall the words of Martin Luther King, "A true revolution of values will soon look uneasily on the glaring contrast of poverty and wealth... America, the richest and most powerful nation in the world,can well lead the way in this revolution of values...There is nothing'except shortsightedness to prevent us from guaranteemg an annual minimum and livable income for every American Whenthinkingaboubthemsts- family." of the program, it is important to think about something Our struggleis notonlytosave known as the "incidence rate", our Social Security system, which is the number of per- which is imperfectand incomsons awarded DI benefits per plete. The struggle is torepair 1,000 insured workers. Over and strengthen that system so the past 25 years, this rate has it can function as a foundation gone up and down, and has which we can stand on as we been going down since 1992. work to create the "revolution It has never gotten as high as it of values" of which Reverend was in 1974. Why is this im- King so eloquently spoke. portant?

Tofind out how you can learn If the incidence rate is not go- more about this issue and who ing up, but costs are, then the to contact to make your views problem lies not in the com- known, see the box on this munity ofpeoplewithdisabili- page. You can also contact ties (each of whom are receiv- ACCESS PRESS or Jeff ingnomore;andprobablyless, Nygaard for further inforthan they ever did), but in the matim or a copy of the arlarger society. The high cost ticles. E-mail Jefat "wren@ of health care and medicines, wavetech.net", or call the the inadequacy of rehabilita- ACCESS PRESS ofice at 644tion and vocational training 2133. services, declining private

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A u p t 10,1997

Access -Press COURAGE

Social Security:

divided on whetherthey would recommend Courage Center Residence to others who need rehabilitation. Some were too disapointedwith CourageCenter not living up to its outstanding public reputation to say they would encourage others to come. Shelton said, "I thought I was coming to the right place to finish my rehabilitation, and when Igot here, I was not only severely disappointed but shocked." He corroborated the views of other

Sources Of Information Policy Makers Any changes to the Social Security program will come out of one of two committees in the federal legislature. In the Senate, it's the Committee on Finance, chaired by William V. Roth. Call him at 202-225-2571. In the House, it's the Committee on Ways and Means, chaired by Bill Archer, 202-225257 1. Congressman Jim Ramstad, on the Ways and Means Committee, is the only Minnesotan on either committee: 202-225287 1, or 6 12-881-4600 locally.

Information Sources The single best source of basic, simple information on the Social Security system is The Twentieth Century Fund (Phone: 212-5354441, e-mail: xxthfund@ix.netcom.com).

They produce a series of pamphlets called "The Basics". Ask for the one on Social Security reform.

(epn.org, or phone 617-547-2950).

Labor unions have lots of great information on Social Security. Especially the National Air Traffic Controllers Association (e-mail: staff@natcavoice.org).

Other names of organizations and people that I have found to be good sources ofeither basic information or of important analysis include: Fred J. Solowey,Dean Baker, Doug Henwood, John Kenneth Galbraith, Robert Dreyfuss, and The American Prospect.

Cqnt.from p. 3

residents that they learned a lot of their skills at facilities which they were in beforecorning to Courage Center.

Other residents would recommend Courage Center, due to thefactthereisn'tanotherresidential rehabilition center available locally. The other option is anursinghome, which may offer more motivation and organization, but can only offer very limited rehabilitation services.

Mohrman explained that she would like to return to the hospital in which her care began, because she felt the staff was generally more responsiveand would push her to achieve her goals. Unfortunately, that hospital does not offer the transitional therapy that would allow her to learn how to live independently.

Courage Center Responds

Privatization Sources

Courage Center was given the opportunity to review the article for ACCESS Press. It was thoughtful of Charlie Smith to allow us to do that.

Sources for the pro-privatization point of view are far too numerous to mention here, but here are a few of the most prominent:

It is of great concern to us if we have nor met the expectations of anyone we serve. Our staff and volunteers are proud of our hadition of service and we will do everything we can to improve ow services. The serviceswe provide through the CourageResidencehave unique fundingand staffingchallengesthat we are well aware of and have been working on for some time. We don't believe that the overall impression of the Courage Residence from this article is representative of most residents' experiences.

The Cato Institute, a libertarian think tank based in Washington, D.C. They are the most visible and strongest proponent; The Concord Coalition; andThird Millennium, a libertarian group purporting to represent the "youngergeneration".

The best book on Social Security and Disability is a book entitled "Balancing Security and Opportunity: The Challenge of Disability Income Policy", from the National Academy of SocialInsurance(202-452-8097, Prominentindividualsinclude: Pete Peterson, or e-mail: nasi @nasi.org).

Jose Pinera, Michael Tanner, Tim Penny, If you have access to the internet (anyone can Steve Forbes, Pete duPont, Senator Bob go to the public library for this), look up a Kerrey from Nebraska; Lawrence Kotlikoff, group called the Electronic Policy Network and Sam Beard.

We value input from the community regarding our services and welcome your ongoing partnership with us in meeting the needs of people with disabilities in the highest and best way.

Dave Phillips, Executive Director, Courage Center

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Access Press

Direct Care Crisis: Study Shows Staff Shortages Will Continue Without Industry-wide Effort

by Mark Wilde

H

uman service workersare in great and growing demand across the state. Individuals who work directly with people with special needs such as developmental disabilities andmental illness, are in short supply. According to a recent study, conditions will get worse despite individualorganizations' efforts, unless dramatic changes are made.

Direct support workers have a variety of titles and responsibilities but are basically the people who work in those small group homes and vocationalsettings supporting the estimated 20,000 people with developmental disabilities in the state. Human service agencies are already having a difficult time filling available positions, and the Bureau of Labor Statistics projects a The report, published in Janu- 136% increase in the number ary by the Alliance for Con- of human service workers sumer Options (a coalition of needed by the year 2005. trade associations and advocacy groups), shows demo- Recruiting and hiring direct graphic and economic pres- care workers is aggravated by sures have created serious several factors, including low shortages in the number of wages and a shrinking pool of people willing to work in di- qualified applicants. Retenrect care positions. tion is hampered by sometimes poor working conditions and Although agencies are taking inadequate training. As a resteps to alleviate the problem, sult, at the time of the study, the study calls for state-wide approximately 9% of direct partnerships between state support positions and 5% of agencies, public and private first-line supervisorjobs were service providers and advo- vacant. cacy organization such as Advocating Change Together. In an effort to understand thk Working as a group toward a current status of employment common goal, the study con- in the human service field the cludes, will create "a compre- study, prepared by Center on hensive new approach" to re- Residential Servicesandcomcruiting, retaining and train- munity Living at the Univering direct service workers. sity of Minnesota, gathered informationfrom 144residensupport workers are employed in Minnesota. Defined in the study as "people who provide support, training, supervision and personal assistance to people with disabilities." They have a difficult and often unappreciated job.

Within the past 20 years Minnesota has begun to realize people with special needs are people first and deserve equal access to the community. As a result, state hospitals and institutions are closing, people are moving into neighborhood homes and findingjobs. While most agree this is a positive and healthy move, it increases the need for qualified staff.

A

Dignity through Quality

Have ILCs Grown Too Big For Their Britches?

by Mike Ervin

I

mendations center around t's been 25 years since the identifying potential employfirst independentliving cenees and educating them about ter (ILC) for people with disthe job. abilities opened its doors in Berkeley, California. From Expanding the pool of direct this little a c m grew an elabosupport workers through the rate and sophisticated moveMinnesota School-to-Work, ment. Today, it's difficult to Welfare-to-work and otherjob find a county that isn't served training programs is one pos- by an ILC. America is a much sible solution. Encouraging more accessibleand hospitable current workers to spread the place for most people with disword through recruitment bo- abilities than it was 25 years nuses is a strategy that has ago, and ILCs have been the been successful in the past. main catalyst for that positive change. But as every great Finding and hiring qualified social movement grows into human service workers is dif- the far-reaching force it hopes ficult enough but agencies are to become, itrisks losing touch also faced with prohibitively with and accountability to the high turnover rates. Accord- grass roots from which it ing to material referenced in sprung. The independent livthe study, tunrover rates in ing movement suffersfromthe small group homes averaged perception, in many segments 47% per year in 1994and 50% of the disability community, per year in 1995. that it has gotten too big for its own britches.

Even more challenging, most of the workers who left did so Have ILCs become too depenbefore finishing 12months on dent on the state and federal the job. Many people leave funds that have fueled this their jobs with human service growth? Has this comproagencies because of poor pay mised their mission? What and lack of benefits, such as can - and should - be done health insurance and paid va- about it? The two words that cations. The study also found b t exemplifythe philosophy problems with supervisorsand and mission of the indepenlack of training to be major dent living movement are reasons why people left their

a high priority of diversifying its fupding sources. Relying too heavily on government funds can take a center off track, Bristo notes, mostly because, "'I'hey put you through so many hoops that you get sidetracked into things like paperwork."

example, attendant programs are run by the state Department of Rehabilitation. Access Living Program Director Rene David Luna says Access Living has refused to administer attendant services because "it could compromise our advocacy role. If there are service cuts or something we'd Another way that diversifica- have no one to bitch to but tion provides freedom is that, ourselves." "if a source 'dries up, we can still survive." About 60 per- But Resource CIL Executive cent of Access Living's $1.8 DirectorMary Holloway says million budget comes from she hasn't found this a probstate, federal and local funds. lem, because she believes havThat includes a variety of ing the ILC closely involved sources, such as funds from makes the program more conthe Department of Housing - sumer responsive. And the and Urban Development ear- money is hard to ignore - after marked to investigateand fight all expensesarecovered, there housing discrimination. is about $75,000 left over for. the center to spend as it: Thosepercentagesprettymuch pleases. "It gives us achance reflectthegeneralaveragesfor to do stuff that is consumerall ILCs. Statistics from the dnven ratherthangrant-driven.

Rehabilitation Services I like that."

Administration (RSA) of the U.S. Departmentof Education, The Disability Rights Center which administers funds for in Fairfax, Virginia, receives independent living centers, no state or federal indepenshow that in Fiscal Year 1995, dent living money at all. Board 250 ILCs had a total operating Chair Carmen Jones says, "We revenue of $19 1,258, 560. can do more of what we want.

About $62 million of that came We're hying hard to keep it from&deral sou=. Just over that way." Thecentec has only . ,= $58 million came from state been around since 0 c t o b e r G Y

"

ties. The results show companies struggling to find qualified applicants. According to a majority of the respondents, the three biggest barriers to recruitments are: lack ofqualified applicants (69% of all agencies reported this to be a moderate or a severe barrier); lack of applicants in general (67%) and compensation or pay (67%).

Although in many cases the stigma of working with people with special needs is diminishing, the study found more can be done to find people willing to do the work. Recruitment strategy recom-

Agencies are trying to provide greater incentives for people to want to work in direct care, and also to stay with the company once they are hired. Some of those strategies include bonuses for new employees q d financial support for &mation, b u t a n y r e a l ~ be state and industry-laridah

serve. In order to qualify for cent.bf the operating h-tiget funding underparts B andC of for U.S. ILCs come from pubSection VII of the federal Re- lic pots. A center with an habilitation Act, acenter must unusual revenue pie chart is beconsumercontrolledin that Resource Center for Indepenitsgovembbsoudm-ba-:.'dent Living in Osage City, &mjarjty o f p @ e with dis- Kansas. Only $15,000 of its &Ws, :., . $3.4 million budget come Prom Part B appropriations. e ~ ~ .Butthat, of course,isonl' ,&' But $3 million comes from Lti- .

- n . arc$' Brwto,- .@ads paid by the Health Care Livingk Wnancing Authority, which ~ c c o r d b g t& o # @ $ ~ '$he sees pays the Center to administer neso& mw#dwe1wmssion" an attendant program for tive wo& 'Eorce devlelopmSt$ @ day-to-day people with disabilities in the nning the cen- 15 counties it serves. twJ as her and her board's high t u r n o v e r m ~ ; l s w l ~ g e sprimary responsibility. And Many ILCs have considered it's a task that requires con- and rejected the option to adand low productivity." stantattention.

That'sthemain . minister attendant programs Care cont. on p. 10 reasonAccessLivinghasmade for extra cash. In Illinois, for C

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board is considering startids an attendant program like the one in Kansas as a means of generating long-term support.

But Bristo saysdiversification is not easy. "We're lucky we're in a resource rich community with a lot of privare funders."

Access Living has also had 17 years lo establish areputation and track record that appeals to funders.

The RSA numbers show that ILCs generated about $64million in private funds in 1995, with about $36 million of that coming as fees-for-service arrangements. Foundations and corporationscontributedabout /LCS writ. on p. 10

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August 10,1997

Access Press

Additional Statue At FDR Memorial

The World Comes To C,I:

by Lolly Lijewski and Margot lmdieke

T

he Twin cities disability community took on an international flavor during the last week in June as women with disabilitiesfrom 10countries came to visit. The Minnesota CenterFor International Visitors along with The Minneapolis Mayor's Advisory Committee On People With Disabilities, The Minnesota State Council on Disability, Courage Center, and the University ofMinnesota's disability services, sponsored three incredible days of activities designed to give the international visitors a view into life with a disability in the United States.

They recently attended the Women's Conference in Washington DC where 600 internationalwomen with disabilities from 94 countries ass e m w . They had heard good about Minnesota. The Twin Cities disability community was honored to be the only stop on their itinerary.

The trip was funded by The United States Information Agency (USIA.) The women haled from Mexico, Namibia, Ghana, Costa

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books to protect the rights of resident Clinton signed people with disabilities. We Senate Joint Resolution also discussed strategies to 29 authorizing an addition to affect social change including the Franklin Delano Roosevelt the use of non-violent direct Memorial on the Washington Since the 1970s, Ms Navarro action vs. the need to use vio- Mall that will portray the has participated in wheel chair lence in some cases against a former president in a wheelsports and held the national recalcitrant government. chair. swimmingrecord for 10years.

Ms. Navarro was selected A common thread in the dis- The legislation, introduced in to attend the 1976 Olympics cussions was that society still May, was sponsored by Sen. and the 1977 Pan-American holds the belief that women Daniel Inouye @-HI) and Rep. Games but was unable to par- with disabilities can not raise a Maurice Hinchey (D-NY) and ticipate ,due to a lack of team family and how they perse- was signed by the President on funds. In 1981, she founded vered in their desire to do so. July 24, 1997. It directs the the Mexican National Federa- All shared frustration, com- Secretary of Interior to make tion of Sports on Wheel Chairs. mon to those in the United this addition.

States as well, about relationTuulikki Nekundi is Chair Per- ships, finding partners, dis- The Natio~alOrganization on son of the National Organiza- abled or non disabled, and Disability (N.O.D.), forthe last tion of Disabled of Namibia. sexuality. three years, has led the naMs. Nokundi is blind and uses tional effort to include a dea cane. She has worked as a The women r e p o d t h a t their piction of FDR's disability in community based rehabilita- time at the Women's Confer- the Memorial. tion trainer for five years at the ence in Washington DC was ELCTN Rehabilitation Cen- draining, but their time spent N.O.D. chairman Michael R. ter, part of the National Asso- in Minnesota re-energized Deland stated, "we are gratethem. In their spare time ful to the Congress and Presiciation of The Blind. some of them went shopping dent Clinton for their leaderWhile here, the international in Minneapolis. They also ship in passing and signing women attended areception at shared hospitality and some this Joint Resolution. We also the Radisson Metrodome with Minnesota's famous summer women activists and academi- magic at the homes of several cians fromtheTwin Citiesdis- Twin Cities women with disability community learning abilities. They formed new about disability culture. The friendships and for a time, the event included lively conver- world seemed just a little bit sation, poetry readings, and smaller. If there was a dodown

P

Mexico, where she initiated courses on sports psychology.

She has a post Polio disability and uses a wheel chair.

immediately evident upon disabilides shared how sports meeting dKm. has been an imp&&t avenue forthemin their adjustmentto All of the women have irn- l i v e dth a disability. Sevpressive credentials. These eral women dvocates from are just a few exszmpls. ,&&&ti@ w-un* di* ~ l a 9 9 a & a d v & , ink a k 3 = n a t i ~ ~ p h i . l i p p i n emars , diyidd d v o c q , arid sysried with three children. She tems advocacy have changed has &postPolio disability and and enriehed their lives and uses a wheelchair. Ms.&y&- the Hves of others in their comZubiagt~is the technical advi- munity.

SQZ and Acting Executive Director of the National Center The international women visof Disabled People, (NCDP) ited the Capitol and met with in Cambodia. The NCDP pro- SenatorJohn Many, and Repvides resources for the social- resentatives Lee Greenfield economic development of and Linda Wejcman They people with disabilities In were introduced to the PwtCambodia. Her work is sup- ners In Pdicy progryn by ported through the United Colleen Wick, Ehecutive DiNations Volunteer Program. rector of. the, Miqnesota Shehas extensiveprofessional Governor's Caundlon Dtvelf experience working with opmental DisaMIib. They people with disabilities in toured BLIND hcotpofaa?d, Cambodia and 'dsewhere. an "ad-justment: to WnQness," Reyes-Zubiagaparticipatedin rek&iEitation hility. drafting the Statement on Women With Disabilities p m The discussions were stirnum t e d d the United Nations Idngand broad in scap6. The Forth Congress an Women m e n told uf 6-6 With Disabilities in kijing in e ~ r e s s i o nin their countries.

1995.

Some were denied acrsess to edu&, while still afhers Martha Heredia Navarro, a talkdabout being denied full native of Mexico, has beer inclusion into society. Many .working to improve the qual- spoke h u t the formation and ity of life for people with dis- implementation of policies to abilities,especiallywomen,for improve the lives of people (he past 20 years. Ms. Heredia with disabilities in their counNavarro is a faculty member tries. They explained some of -oftheSchool of Psychology the difficblties experienced in the M a t i d University of enfoFci~glawsa b d y en the

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thank the many disability organizations and individuals across the country whose tireless efforts brought this victory. The legislation ensures that future generations of visitors will know that FDR led the United States through the Great Depression and WWII from his wheelchair."

Currently, none of the nine statues and bas reliefs in the Memorial's 7.5-acre, open air park site show that President Roosevelt had a disability.

The legislation requires that the addition to the Memorial be funded by the private sector at no expense to the government. N.O.D. has begun to raise the funds. N.O.D. President Alan A. Reich stated. "we are calling on the American people to help build this statue by contributing financially, just as FDR himself called on the American people to conquer polio through his 'March of Dimes.' After all, FDR's

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to p-,@*y.

disability was central to his character and shaped his leadership. President Roosevelt was a hero for all mankind, and he deserves to be recognized by futuregenerationsfor his many achievements, including his triumph over his disability."

"It is our hope that a statue of FDR in a wheelchair will be dedicated by President Clinton within two years," said James Dickson, N.O.D. Director of Community affairs. "Every day that passes, thousands of visitors to the Memorial don't see that our 32nd president was a great man who had a disability, and that he used a wheelchaireachday of his four terms in the White House."

Donations, which are tax-deductible, shquld be sent to: _ Riggs National Bank of Washington. D.C., Attn: N.O.D. FDR Memorial Wheelchair Statue Fund, Dept 0571, Washington,DC 20073-0030.

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ful@sienjficentev?n&.@nce '%%&&dA~-M?,+i~df-.pW-.&e Twin Ci&s diiability community. T%euvidt brou&tne#rmkr&b~~ ability community andm understanding Wt M e thq may speak a &ffguage, the language of &ability is internatimd.

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ILCS- Cont. from p. 8 $6.5 million. Regardless of funding sources. Bristo says, "safeguarding the mission" begins with an 1LC's board of directors. But that doesn't mean, shecautions,that boards should only consistof "movemerit people" as she puts it those who have been in the trenches. "1 don't believe we should exclude people either way. Ithinkwehaveansponsibility to find people who connected in the move..aren't .,. . . . ,ent,,ground themin the philosophy and bring them in."

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There is constant tension involved in findingthe right balance on the board, Bristo acknowledges. Those who feel most passionately about the mission tend to be graSSrOotS people who feel disability oph m h l ~and fiepression quently because they are the isolated things like poverty and h ~ ofkeducation.

But running an ILC also requires business and financial savvy, and p p l e who have these skills are often far re: moved from the realities of living with a disability and I

. ,

I

may not feel the same sense of ter, Pasquesi notes. urgency.

So Pasquesi and other orgaIn the celebrated case of the .im rnanged for those who consumercoupatthePmgress were disenchanted with Center in Oak Park, Illinois, Progress Center to pack the the primary issue was the room at he Center's annual detachment andlackofresponneystoppeduntil the siveness and effectiveness of meetingfmmcontinuing

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sumers. "Just so they win out in the end.H "Hove tm ~i~ for 7heir ~ Grown ~ reprinted i ~withpermissionfrrm~ne~teP h ~volume d , 4, M~~ 1997

made thewedifference.

Evan ~ ~ ~ I ~ ~~ wise all would haveOtherdone 91 5 1 Kemp Hampton overlook,

Center's board (see One all board memben and the was shut the place down. A capitol Heights, MD 20743.

Step Aheud, February 1996). executive director had re- Rally impomntpmwahavsigned and left. An alternative ing people who were ready to onestep~~dis a monthly slate of board members, con- do the work." Having 'movewhich provides sistingmostlyofactivisb,was mentmpeopIedeeply invested publication news, information and re-

Mark Paquesi was an -employee of .Progressduring the time things deteriorated, and became an organizer of the consumer uprising that led to theresignation of the,board. .

submitted and voted in. Their in the center in whatever capeoplehealthondiwith disabilif , t action w z to hire a n w paeity is the key to sdeguard- sources ties andto chronic director. ing the m'ission, Bristo con- tions and their caregivers.". cludes. It could be as board or "We had been trying to work ~ ~Pasquesi t , emphasizes, the staffmembers oras activeconwith the board for two years. m e board was not expading.

Itwas contracting." The board cont. from p. 8 consisted almost entirely of "people who were well off and As part of its Health and Hu- fore they are hired; expanding out because of budget and time safe," Pasquesi says. There man Services Appropriations career opportunities; and in- constraints. was only one African Ameri- Bill, the Minnesota House of creasingthe availabilityofhigh can on the board and no deaf Representatives past a 5% quality competency based The study makes clear the cwpeople, he recalls. Cronyism. Cost ofLivingIncrease. While training for workers. rent employment needs in the became a big problem, this is a essential step, human field. If human service busiPasquesi says, as friends of service professional agree it is Too often potential employ- nesses, advocacy groups, and board members filled open not enough to solve the grow- ees have unrealistic ideas about stateagenciescan pull together spots on the board and got ing problems of low wages the challenges and rewards of to address some of these iscontacts and jobs from the and poor benefits. working with people with de- sues, they can collectively Center. When the staff subvelopmentaldisabilities.Even make strides to improve the mitted names of people they Strategies suggested in the re- employees who meet the chal- status of workers, increase the thought would be good board port to increase employee re- lenges and excel are often dis- number ofqualifiedapplicants, members, nearly all were re- tention include developing. couraged by the lack of estab- and, in the long-run, improve jected - and staff morale programs to ensure new hires lished careerpaths, while those the quality of life for people dropped so low that it threat- have complete and accurate workers who need more train- with disabilities. ened the survival of the Cen- information about the job be- ing often are forced to go with-

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