May 1998 Edition - Access Press by Access Press

Students Crossing Bridges - p. 8

Page 6

Access Press 1

1998 Legislative Review Victories, Compromises

A 1.

by Charlie Smith, Editor

t the close of the 1998

Maintain Access to Special

sure that counties w~llab~de

of the issues brought to the Capitoi were e h b w d on a bipartisan level but due to the political process many bills containing our issues were vetoed by the Governor.

ment from the medical Assistance program; ensuring strong informed consent provisions are required before parents authorize the billing of their health plan.

Theconsortium forCitizenys with Disabilities (CCD) has become an effective group of committedadvocates. Showingupatcommitteemeetings, informinglegislators,andjust being a presence for people with disabilities. The CCD members are iesponsible for . . . many of. the victories made this past year. One of the reasons the CCD is successful is due to broad representation of its members. They come together and support each other, making sure each issue gets the attention it needs. Thedisabilitycommunity at large owes the CCD a gratitude of thanks.

formation The Health and Human Sixvices bill creates an independent office within theDepartmentofHealth.The office would employ nlne advocates to asslst consumers who are encountering problems with their health plans.

Among the components of concern is language that sunsets all rules exceeding fed- F u n d Home Ownership era1 requirements for special Counseling f o r Particieducation services; a provi- pants of the Fannie Mae sion that forces the state to HOMECHOICE Demonpay up to 50% of school dis- stration Project Funding trict litigation fees in certain was included in the Economic circumstances;and a require- Development and Housing bill mentfor all school districts to that was vetoed. It was not request insuranceinformation included in the trimmed verfrom families and begin billing sion passed during the spethem for certain health related cial session. services. Expand Services to People Improve Coverage of Du- Affected by Fetal Alcohol rable medical Equipment A SyndromeIEffect A major bill was passed whichprohib- initiative was passed to exits health plans from limiting pand awareness, prevention durablemedicalequipmentto and intervention services to in-home use only. It also re- women, families and children quires health plans todisclose affected by abuse of alcohol coverage information for du- during pregnancy. rable medical equipment upon Provide Relief for Persons request. withDevelopmentalD~sab'diPatient Protections and ties Waiting for Waivered Clarify Case Management services The Health and Provisions in the Managed Human Services bill contains careDemonstration Projects a provision requiring the Defor People with Disabilities partment of Human Services Counties participating in. the to present a *port to the Legdemonstration projects will islature on the cost of serving have to comply with the Pa- more than 2,000 people who tient Protection Act and other are waiting. It also requires the consumer safeguards that are Commissionerto provide pubrequired of health plans. lic information about spendClarificationwas made to en- Review - cont. on p. 3

Photo by James Horace

Court Ruling Gives "Death Sentence" To People With Disabiliti2s

I I

~y Bob Griss

n unambiguously brutal candor, the U.S. Court of Appeals recently ruled that the Medicaid program can in some cases withholdmedicallynecessary treatments even when such withholding might impose a "death sentence" on Medicaid recipients. Concerned readers of ACCESS PRESS are asked to contact the Clinton administrationand demand that this ruling be reversed. This article will give you the information you need to do that.

problem with the list that Con- who have costly treatment necticut was using is rhat it needs. This decision invites was prepared based on the States in the Medicaid proneeds of the "average pa- gram (as well as private emtient." That is, with no regard ployers and private insurers) for quality outcomes, for the to rely on exclusive lists that medical needs of individual limit benefits to the needs of patients, and with no excep- the "average patient." If this tions (noteven for individuals is allowed to stand, it has the withdisabilities orchronic ill- potential to undermine the The following is a recap of nesses). A federal district Medicaid entitlement and issues brought to the Capitol court ruled that Connecticut make a mockery of the Con- this year: could not do this. sumerBil1of Rights. .-- Increase Medical Assistance That federal district court rul- In theU.S. healthcaresystem, Income Limits The Health ing was reversed by a three- 10% of the population ac- and Human Services bill injudge panel of the Second counts for 72% of total health creases the income limits by The original ruling had to do Circuit Court of Appeals, in a care expenditures. As a soci- $47 per month for people who with an attempt by the state of case known as "Desario'v. ety, we know that the needs of are disabled or elderly and Connecticut to deny all re- Thomas" (No. 97-6027, U.S. people with rare or medically who liveindependently. This quests by Medicaid recipients CourtofAppeals, 2ndCircuit, complex conditions arecostly. increase is for people who are for the provision of specific February 24, 1998). The In fact, Medicaid was de- on RSDVSSDI. This is the durable medical equipment Desario decision essentially signed as an entitlement pro- first increase in nine years. It (DME) unless the equipment said that the government has gram partly to reflect the de- also puts in place a cost of appeared on apre-existing list no obligation to persons with sire of the American people to living increase for the future. )f covered equipment. The rark or unusual conditions, or Med. Alert - cont. on p. 7

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Angling Horizons Of MN t's almost that time of year weekend of for Angling Horizons of fishing. AnMinnesota to conduct it's angling Horizons nual fishing event for persons has also been with disabilities in Side ~ a k 6 , a b out conMinnesota on the beautiful n e c t i n g Sturgeon River Chain of people with Lakes. Pine Beach resort will people. Makbe our host site June 12-14. ingfriendships Angling Horizons of Minne- that begin with sotawillalgainbeputtingsmiles a great BIG

State ChiWheelchair Policy up -

he StakofMinnesotab decJded to discontinue its yolume purchase contract for wheelchairs, previously held by Everest Jennings, , which eliminated the home health care prodex as the link be-

Minnesota has deeided tolet the free market system prevail by eliminating this obstacle. They also have made a bold statament for theconsumer by taking into consideration the needs and preferences of

Second. because of competitive market factors, prices for wheelchairs have dropped nearly 25 percent since Minnesota's last contract was established 5 years ago. The existiagcontrmt was, in fact,

consumer, wkib also restrict-

Intermedia -,

Mpls

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Receives

College, Coon Rapids 615, Fri 7:OO. " H A I R Usi- T h e a f m d e J a h L 5116, Sat 8:00, "Why We versityThe8tre.Universityof 6/5, Fri 730, 'The 500 H Have aBody" Outward Spiral MN,Mpls Bartholomew Cubbins" @ Intermedia Arts, Mpls 5117, Sun 2:00, "Anansi"

ofBarth010m~wCubbins"The

AudioDearibed

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through the Access atre project. Contact aterorVSAMN(332-3 5/20, Wed 7:30, "Dial M for 5117, Sun 2:00, "A Moon for Murder" JungleTheatre,Mpls the Misbegotten" Theatre in further details. the Round Players, Mpls 5/29, Fri 8:00, "Red Harvest" Theatredela Jeune Lune, Mpls

he Franklin and Eleanor Roosevelt Institute- and the World Committee qn Disability honored Canada at the United Nations as the recipient of the Franklin Delano Roosevelt International DisabilityAward. Established in 1995, the award recognizes and encourages progress by nations toward the fulfillment

societies. Canadawasawarded a bronze bust of FDR and a $50,000 grant for a nongovermental disability program in their nation. Canada is recognized for elevating disability to the top of its national agenda. Efforts have included a national strategy for integrating persons

Freedoms, which prohibits discrimination on the basis of disability. The Employment Equity Act strives to ensure employmentrights. Canada's internationalleadershipon disability was highlighted by its spearheading the worldwide campaign for a treaty to ban antipersonnel landmines - a major disabler. And, Canada

Persons - the full and equal in Canadian life. The Cana- of Opportunities for Persons participation of persons with dian Parliament introduced withDisabilities. disabilities in the life of their the Charter of Rights and

SPECIALIZEDTRANSPORTATION I

529-5019

483-9143

May 10, 1998

Access Press IN BRIEF. Scholarships Available

n cooperation with the President's Committee on Employment of People with Disabilities, corporate sponsors NIKE, Nordsbom and Sprint have pledged college scholarships for people with disabilitiesforthe 1998-99academic year.

Foreachofthenextthree years, Nordstromwillgrantfive$2,000 scholarships to undergraduate students with disabilities who are enrolled in business degree programs at four-year accredited colleges or universities in the United States. In doing SO, the company will begin its second c&se&tive The President's Committee is three-year commitment to the proud to announce the gener- President's Committeesscholosity of NIKE, Nordstrom and arship program. Sprint in creating career pathways through higher educa- Sprint will award three $2,500 tion, said Chairman Tony scholarships to students with Coelho. NIKE has made a disabilities pursuing business three-year commitment to degrees at accreditedfour-year award one $2,500 scholarship colleges or universitiesduring annually to an undergraduate the 1998-99academicyear. student with adisabilitymajoring in sports orrecreationman- To be eligible for any of these agement, sports marketing, scholarships, applicants must sports medicine, or sports or also be either current high recreation retail at an accred- school seniors or undergraduited four-year college or uni- ates currentlyenrolled in fourversity within the United year colleges or universities. States. They must be United States

REVIEW

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citizens and have documented disabilitiesin accordance with the Americans with Disabilities Act. Each scholarship awardedwill bepaiddirectlyto the accredited college or university by thesponsoringcompany and may only be used for tuition, room and board.

...

Mental Health Committee Members Minneapolis Human Services Network is seekingnew members: consumers, family members, others interested in mental healwillness for its Subcommittee on Mental Health.

Meetings are held on the secand Tuesday of the month, 3:OO-4:30, at the Minnesota Church Center. The Network publishes the Miniguide to Public Mental Helathservices

in Henn. County and conduc~s public forums, focus groups, and provides community advocacy. For information, call ShellyZ.~~ek870-0011.

l~echnologyConference

The Rehabilitation Engineer- Regency Hotel, Mpls, June26- muchmore.FormoreinformaTo request an applicationbook- ing andA~sistiveTechnology 30. Topics include engineer- tion, call the Star Program at let, contact the President's Society is holding its interna- ing, computers, wheeled mo- (612)296-2771 or 1-800-657Committee on Employmentof tional conferce at the Hyatt bility, job accomodations and 3 8 6 2 0 1-8OB657-3895o. PeoplewithDisabilitiesat(202) 376-6200 (VOICE), (202) 3766205(TDD). Opportunity Partners will be Finanical planners Arnie discusscharitablegiving,wills, Completed applications holding a free estate planning Gruetzmacher and Daryll and trusts. To register,call should be sent to the seminar on Thursday, June 18 Stenberg of Life Planning for Denise Covington at 9 12-2492. President'scommitteeon Em- from 9-1 1am at55000pportu- Persons with Disabilities and ployment of People with Dis- nity court, Minnetonka. att~rne~~obert~undersonwill abilities ScholarshipProgram at 1331FStreet NW,Washington, DC 20004. Applications for all three scholarshipsmust Sixth annual ride to celebrate agedtobringtheirbicycle,roller Boulevard. Freeevent butprebe received by 4:30 p.m. East- mental health thm exercise blades, running or walking registrationisneeded,callJudy em StandardTime on May 29, sponsored by People, Inc. will shoes for this 6 mile scenic 644-2232VKIY. be held on June 13" starting at route from Minnehaha Falls 1998. ')I I O am. Participantsare encour- along the kississippi River

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Estate Planning

Tour De People

p. 1

Israel, Minneapolis. Reed Martin, is a nationally-recognized attorney and p-w' on special e d u c a M law. He willpresentin-non re-

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cent changes in federal law and provide updates on recent corn ma. To register call, F'a~erCeder(612)827-2366V, 8 2 F 7 7 ' 7 O ' I -T* Y . ,l-~~.

Rise Golf Tournament

managers for mental health, if

-7

Reed Martin Comes To Minnesota

Pacer Center is sponsoring a free workshop for parents of chil&n with disabilities on ing patterns of counties who do not spend their Case Management ResponsibilitiesTurned Tuesday,May 19,1998,from 9full waivered services allocation. Over t o Some Counties. The counties may 12:30 or 6:30-9:30 at Temple bill Medicaid directly for the actual cost of the ImproveMetmMobilityTransportationSer- case management services, enabling them to vicesNegotiationswiththeMetropolitanCoun- have a greater portion of their costs reim-

Fishing Tournaments

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tion contact 627-3529. Human ServSces than annual reassessment. Improve Access t o a u g u m e n t a t i v e a n d of their hearing befo Alternative Communication systems. tion ofneurolepticm Increase Refm~~~$for@NUmIng ~ ~ i l iH~~ k , c m d W 7 b + Programs. A three percent inflation+'i* crease will help providers recruit and retain better qualified staff to work with people who Visio have disabilities. provide the six day, three part workshop series A $1 MilIionDollarVocational Webabilbtio~) throughout the state. Appropriation. This will provide and fund assessment, vocational training, andjob place- Replembering Wi Dignity Rider Request ment services. Appropriation allows the state to receive an pdditional$4 million dollars in federal matching funds.

MINNESOTA STATE COmCIL ON DISABILITY

New FundingforExbt@g@ New Housiug sim)$195,000. Dpto Initiatives. Funding to preserve the federally- $29,250wi11be used assisted hoking, transitional housing, penna- to hire community nenthousing, and family ho~~desspreventiop.based part-time organizers. No allocation of f ~ n d i n ~ f o r ~ r i dprogram, ges a housing program for persons with mental illness. The information gathered in this arM e n t a l H e a l t h G r a n t s t o 1997Flouds tic!e was compiled Counties, Th@&m@lH&thCommunjCy $om informetion We provide Personal Care Assistants Home Health S&mrt fiogr&&%&p-&&bueas provided to A C- Aides Homemakers*Livetin Caregivers* Nursing crlsiswwiwnlaterf to WIW. The services . CESS PRESSfrom OurRehabilitativeServicesinclude: Physical/ were a r ~ r e ~ b l e , l e a % k ~ C SwithsizP's members of the Oceu~~unaWSpeec~piratory Therapies able de,Peits in t h e k p m & ~ . Consortium for PCA Provider Organization -. Citizen's with DisMAIWaiverMedicareCertified WN abilities

fe6.o).

) 544-0315 or

1-800-231-0315

Spring . a . p @ u m:,~,f1 ..99 --t8 h .. -To~xan@ie?T&6 lb&hly'EMReligious Issuks krroundirig Assisted Suicide r

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Featuringvideopmsentatimsby noted spokespersonsrepresentingthe varied viewpoints. For further information call: 612l296-6785 V m Y or 1-800-945-89 13 V m Y E-mail: council.disability @ stak.m.us Fax: 6 12-296-5935

PK-:' .-. -+ ..

Life Goes On

The Twenty-Four Hour ccupation

Ion Mental Illness

Bad News And ~ o o News d by Peter Feigal

LeAnne Dahl

henitcomestothestate powerful voice, and we are The good news is that just of Minnesota's mental beginning to have a chance to plain people are talking more openly about mental illness. They are breaking the silence good news and bad news. The good news is that ad- and the generations of tradi-

my life, Iknow I was consumed hour occupation? Does it creep to organize all this. disorderdmental illness is at made in legislatures all over face, being 'Minnesota Nice' by the mounting pressures that into our everyday conversaepidemicproportionswithbe- the country. Attitudes and and are telling the truth and By the timethis individualgets all related to having adisability tions with friends? tween 20 and 25% of Minne- opinions about mental illness acting and excepting the conIn a recent discussion with a bed with the help of his PCA, spilled over into my interacfriend, we talked about how he's exhausted. And unless tionswithffiendsandco-workorganizingour lives so that we game, the routine will begin all my husband or me. can survive as a person with a over again the next day. Is

laws of this country. Equality definitions of the words

sands of families are suffering possible for the mentally ill. in hell-like agony, judged by

until we close them at night, it with adisability? takes much thought, time, en-

"inner tyrants", cut off from becoming more mainstream, family, friends,even their own talked about more openly then ever before, with Newsweek and Time m a g a n e each havget across, but I also have to whatthecorrelationisbetween The badnews is that in 1998, ingthreeconnectedcover sto-

year struggle, people sometimes ask if it's hard opening

mental illness is kind of like being present and conscious at your own autopsy. All the failures, disasters and humiliations are publicly ac-

takes muchmoreenergy,much more stomach lining. I stayed silentforyears,sweatedinthat damn, dirty prison for far too long, holding myself in, feeling The good news is that the in- that lump inmy throat. Believ, HMO's, and man- credible new technology and ing I was the only one an earth

ship to the point of even losing their jobs, simply for having the good sense to seek treatget to a job, he must daily Paul. Sometimesafterrepeat- don't want them to hear my ment for a genuine illness. h e d u l e futuremetromobility edly calling Metro and having complaints. Mes. Now he's off to hisjob in them promise they'd be there, ews is that insurance ing the course of his eig

beginning to bring this cause into the forefront,just like Liz Taylor did for the cause of AIDS in the '80's.

tioned in a miserly fashion. better treatment and will aid in to break open, to heal.

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in desperation and cri- the breaking of the stigma of Missing Doctors Appointments? People sis are brought into treatment mental illness. facilities, only to discover that Special Tran . lortation the help they need is not fully The good news is that available. They aremedicated churches of every denominato the eyebrows, soothed for a tion are becoming more inIs Available few days, and then flung back volved in the struggle. Reli-

i n n e m statue allows special trasportation for "the recipient who has aphysical or mental impairment that would prohibit the recipient from safely accessing and using a bus, taxi, other commerical trasportation, or private automobile. Driver-assisted service includes passenger pickup at and return to the individual's residence or place of business, assistance

with admitanceoftheindividual to the medical facility, and assistance in passenger securement in securingof wheelchairs or stretchers in the vehicle." "Recipient" refers to: a Medical Assistance (MA) recipient; a General Assistance Medical Care (GAMC); or a MinnesotaCare enrollee under the age of 2 1or a pregnant woman.

Enrollment requires a Physician Certification of Need for Special Transportation form. A Physician who knows the recipient's physical or mental health condition must complete and submit the form to: Department of Human Services, Transportation Benefit Policy Section, 444 Lafayette Road,St Paul,MN55155-3853.

OM"

METROPOLITKN CENTER FOR INDEPENDENT LIVING

MCIL OFFERS SERVICES FOR PEOPLE WITH DISABILITIES, THEIR FAMILIES AND FRIENDS, SERVICE PROVIDERS, AND I N T E R E m D COMMUNITY MEMBERS I N THE SEVEN-COUNTY METRO AREK

Intonnation and Referral f l , m m a h hoclirrc.612-603-2039) @ A ~ V Q C ~ Independent Living Skills Tnining 9 Iadividud Peer Support Deaf L L Services Support Groups... currently: T r d Brain In* ChemimlDapcaercyd~picnlDk.bil?v Penondr4rt&an& F A X )d F e m i l y Carqivm

Personal Assistance Services (M.A.Subsidized) Ramp Project @ Transition Program Q ADA Information Meeting Rooms @ Computer Lab 4IS Library 1600 U N ~ R F I T Y AW., V ESm16 . ST. PA^, MN 55104-3825 /6U) 646-8342 VOICE 8 (6D) 603-2001 nr 0 (612) 603-2006FAX ~ ~ / / W W W . M A U LORC/MCZ& .

The good news is that this is changing. Mental health professionals are beginning to talk toconsumers, getting their points of view, learning from us, the d mental health professionals, what does and doesn't work. The pros are understanding that it's the consumers, the mental ill themselves, that have some of the most valuable insights, have 'Bonorary degrees" in psychology, pharmaceuticals, and legal and insurance issues. TheMinnesotaPsychiatricSociety sent a contingent of Psychiatriststojoin in the Walk for Research this past May 9", and bridges like this between' mental health professionals and those with the disease can only help to bring this affliction that's been shrouded in mystery and dread out into the open. We consumers have a

$* 73fUOPU~.h

into the cold until the next crisis arises. Mental health professionals seem to be as helpless as therest of us, and in the words of one licensedpsychologist I spoke to, "No real healing is possible in these conditions. They come to us in flames and we treat them for sunburn."

gious leaders are feeling the effectsof this epidemicin their congregationsand are moving forward to help. The essence of mental illness is the sense of abandonment and isolation the suffering brings. The feeling of being utterly alone, cut off from all resources, of being abandoned not only by man but by God, is literally souldestroying. What I've heard a thousand times in hospitals and groupsor said myself many dark nights, is "My God, my God, why have you forsaken me?'The spiritual aspects of this disease are finally being examined andmany people are turning to their churches and synagogues and are not being turned away.

The good news is that every day, more and more people are joining in this struggle. Those with the disease, family members, concerned friends and neighbors. Rabbi Hillel's quote, usedin the '50's and '60's Civil Rights struggles is just as applicable taday as then: "if n d us, who? It not now, when?" This is where the real change is being made, inside human hearts, changes that dwarf any made by simple legislators or officials.

Mental illness forces on us with a terrible, seductive necessity, the pressure to scale ourselves, our dreams, our faith, our commitment, down to the level of our immediate experience,which is the suffering. and hell of our disease. There is a transcending power that can resist that terrible necessity. The power of hope. And the good news is that this gift of hope is one that we all The good news is that mental can offer in our faces of love to health organizations,the Alli- all people, of all faiths, everyance for the Mentally Ill, the where. Mental Health Assoc., People, Inc. Supportive Living Services, Bio Brain, MDMDA, Patronizeyour S.A.V.E., Recovery andmany Access Press others, are trying to take up the Advertisers. Let slack caused by medical, insurance and governmental in- them know where you ertia. Too many are being lost heard about them. between the cracks, but more They bring you your and more are finding help.

K X

inn

May 10, 1998

Access Press

R - P @ y c ~ ~View: o g ~-Of ,~~, - -, _ I

by Carol J. Gill, Ph.D., Chicago Institute of Disability Research not an anthropoloociologist or histoake no claim to underp ,.& standing culture from any of those perspectives. As a psychologist, however, I have become interested in the impact of culture on the emotional well-being of individuals. Moreover, my interest is deepened by my own minority group membership (Disabled

That year, I also attended an incredible disability community event in Southern California: the mournful yet triumphant commemoration of the annihilation of more than two hundred thousand Disabled peopleinHitler'sGermany. A Deaf survivorofthe holocaust recounted the hoiror and destruction of her people. We (Deaf, physically and cognitively Disabled participants) lit candles, told the story, viewedthephotos,cried together and proclaimed to each other "Never again!" It was the first official Disabled people's cultural event I had ever attended.

work as a clinical st spanned sixteen undreds of clients ranging in age from adolescencethroughend-of-life,both with disabilities and without. Having conductedmy doctoral research on identity develop- Also that year, I began to ment, I was often concerned ' present publicly my thoughts with the pressures andrewards about disability culture. I adof minority group identity in dressed a chapter meeting of my clients. Particularly,I was the California Association of i m p m a d b y the way cultural the Physically Handicapped affiliation mediated dueeffects (CAPH). Using afamilymodel of social devaluation in per- to describe our orphan-like sons from the African Ameri- dependence on an arrogant, can,Latino,Asian,non-Chris- rejecting able-centtic parent tian, and gay communities. culture, I suggested to the twenty-some assembledmemIn the mid 1980's, I accepted bers that we could oppose our aninvitationtoattendshabbat social devaluation through at a Jewish temple recognized developing a strong disability

country still pull that issue out of their briefcases and wheelchair bags to show me that they've kept it.

TfI& m m o m

political struggles, that are reflected in our art, conversations, goals and behaviors. They include:

l)An acceptance of human differences (e,g., physical, functional, racial, intellecFrom the time of the CAPH speech, I have focused on four tual, economic/class). major functions served by the development of a disability 2) Amatter-of-factorientation culture. toward helping; an acceptance of human vulnerabil1)Fortification-Thedefinition ity and interdependence as and expression of our value part of life. as a community charges us up and enriches our lives, 3) A tolerance for lack ofresogivingusenergyandendurlution, for dealing with the ance against oppression. unpredictableandlivingwith unknowns or less-than-de2) Unification -As we hear ad sired outcomes. nauseam, people with disabilities are a heteroge- 4) Disability humor-the abilneous community encomity to laugh at the oppressor and our own situations, to @ngdifferentages,races, genders, socioeconomic find something absurdly histatuses, etc. The expreslsuious in almost anything, sion of our beliefs and henhowever dire. tage in cultural activities, however, brings us together, 5) Skill in managing multiple encourages mutual support problems,systems,technoland underscores our comogy and assistants. mon values. 9 A sophisticated future ori3)Communication-ourdevel- entation; an ability to conoping art, language, symstruct complex plans taking

DHAbILl"rY C a m B :

those who doubt ;he probabil- beliefs regarding issues such ity of adisability culture. The as eugenic, abortion, nursing elementsof our cultureinclude, homes, community access certainly, our longstanding entitlementtoaccommodation, social oppression,but also our media images and, "special" emerging art and humor, our anythingarebecorninguniver piecing together of our his- sal. This is due, I believe, not tory, our evolving language only to our exchange of more and symbols, our remarkably information, but also to our unified worldview,beliefs and transmission of values about values, and our strategies for life with adisability. surviving and thriving. I use the word "remarkable" be- Maybe "culture" is not tht causeIfindthatthemostcom- proper term for a set of elepelling evidence of adisability ments deriving from amixture culture is the vitality and uni- of: 1) inherent differences; 2) venality of these elements societal treatment;and3)trans despite generations of crush- mitted facts, interpretations, ing poverty, social isolation, and preferences. But what lack of education, silencing, better term is there for that imposedimmobility,andrelent- collection of common views less instruction in hating our- and expressions that increasingly characterize Disabled selves and each other. people everywhere? What else Our culture has been sub- do youcall that familiar, com merged by the profundity of fortablerhythmofsharedmeanour oppression and the forces ingsthatDisabledpeople,even that havedivided us from each strangers, fall into when they other. But any time disabled meet? That wide-ranging people have been able to come compatibility isdifficulttocontogether,culturehasflourished vey to those outside of our - in hospital wards, in special community, howeversensitive schools, at charity camps,dur- they may be to disability rights ing sit-ins, during creative issues. (Maybe that is one reaworkshops, in peer-support son that some of our most groups, in the hotel corridors aware nondisabled allies and

history and folklore, explain-

weeping,embracing,and sing- of focusing on disability cul-

ativity,cooperation,andmulti- we began to attach to these

titularly new and young Dis-

tiesand offeringthem asense of group "belonging," CORE VALUES. I have been

24 HOUR ON CALL SERVICE

operating.

CwR?RB

study. Afterward we were something like, "Yes, we have swamped by members of the learned something important audience from across the U.S. about life from being Disabled

tical to our interviewees.

Rehabilitative Services PCA Provider Organization Medicare CertifiedlMedicalAssistance

abled friend from Scandinavia. people whether activist or not,

DIRECT BILLING TO MEDICARE MEDICAID a OTHER INSURANCE

OSTOMY - URINARY MANAGEMENT NURSING SUPPLY SPECIALISTS

sion of our culture. AS I travel

common usage and understanding of such terms as

20 10EastHennepin Avenue, Bldg.#5 Minneapolis, MN 55413

- the values that undergird our culturewas,I would agree with participants in our education embrace of the term that goes

rersonal CareAssistants Home Health Aides Live-in Caretakers

Physical /Occupational1SpeechTherapies

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normalization, and passing. Our emotional reactions and

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Access Press

MED. ALERT

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assure that no one receive a "death sen&meYa due simply spit&of in the I3esario cme kgitinzates disfyiramnrrtp& crimindan the b i s af or who you m,for-what say, for how you look; diagnosis wlkh s M m . if way . - . .time you stop ' a form of " a c a l neces~ d you do, not see y o u r s e ~ g i ~ + ~ R ~' d m t ; do nat, w f m ,give up on youwp- . s i t y " f o r ' ~ ~necessity", I and repmen& a significant

M ~ @ c y l & t e r s E o r d i f - system,peqe withhigh-cost may do so kfswfficht public ferent types of D m ,with the health care meeds are particu- pressure is applied. operation of Medicaid pro- larly vulnerable. That's why it grams throughout the coun- is~ialfwtheDepartmentof It is essential Phat the Climton try, mdwithevery federalcourt Health and Hwnan Servicesto A d m i n i d m know hwcitidecision that dc& with the set a standard for public ac- zens feel about this important zadm&y crf state Medicaid countability in the Mdicaid judiciatdecidon! Plcsecsullor programs t o e x c l u d e ~ c u l a r program which d l insurers, fax immediately the key pertypes of treatment within a public and private, wilIr~%dto msintheAdministratios1who Medicaid coverage category. respect. have ultimatedecision-making

get b u d .

responsibility for the Me&aid program, and teIl h . t o supportthe plaintiffs' p e t i h cept of Medicaid asan enmitle- ~ a T@@ c b& l m for rehearing. These include: TheCCD's HealthTaskForce Presideat Mil Clinton, 1600

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~tlnreat~evcrypersonwko may develop a -, rnufi~al, And of coursethe crucial con-

or cosElytm&nmntd in the

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May 10, 1998

Access mess News From Washington Crossing Bridges To Respect by Jamilyn Coleman & Graham Higgins Employment Update

n March 13, President Clinton signed an executive order establishing a National Task Force on Employment of Adults with Disabilities. The Task Force will bring the powerof govemment to bear in an attempt to increase the employment rate of people with disabilities to a rate closer to the general employment rate in the United States. The executive order stems from a recommendation developed at NCD's 1996National Summit on Disability Policy by a diverse group of more than 300 disability community leaders.lleTaskForce, which will be chaired by Alexis Herman, Secretary of Labor, and vice chaired by Tony Coelho,chairman of the Pres,ident's Committeeon Employment of People with Disabilities, is charged with developing policy recommendations to reduce employment barriers for persons with disabilities. Social Security U p d a t e NCD chairperson Marca Bristo, member and return-toworkexpertBonnieO'Day, and Director of Policy Andrew J. Imparatometwith SocialSecurity Administration Commissioner Ken Apfel to discuss Disability Policy: A Progress Report, and Achieving Independence. Susan Daniels, who participated in the meeting, recently has been promoted to Deputy Commissioner at SSA. In her new role, she will continue to oversee the disability program but will have additional responsibilities as well. Americans with . Disabilities Act (ADA) Update The Department of Transportation (DOT) issued its Notice of Proposed Rule Making (NPRM)on March 20, requiring over-the-road buses

(OTRB) to be fully accessible to passengerswith disabilities. As major bus linesreplace their existing fleets with new mode l A l f i l l i n g a key element of the Americans with Disabilities Act. DOT will acceptpublic comment on the proposed rule for 60 days and said that it is open to all suggestions for providing accessible, nondiscriminatory OTRB service to passengers k i t h disabilities. DOT expects to issue the final rule this fall. Major OTRB carriers such as Greyhound have criticized the NPRM in the press and on the Hill. Disability advocates are concerned that Greyhound and others will push for legislative language in a transportation funding bill currently in conference to limit or eliminate DOT'S ability to regulate in this area, possibly by amending ADA. This bill is slated for action soon.

ers from diverse professions who are committedto building a stronger,healthierAmerican community. Applications are available at HUD's Web site http://www.hud.govl combuild.htm1, or call 1-800497-3823. Staff Changes

In December 1997, Sharon Perley Masling became SenatorTom Harkin's new disability counsel, replacing Robert Silverstein, who now directs the Center for the Study and Advancement of Disability Policy at George Washington University. Ms. Masling was a supervising attorney at the GeorgetownFederalLegislation Clinic, where she provided legislative counsel to both the National Association of Protection and Advocacy Systems and the Consortium ofCitizenswith Disabilities. In addition,Ms. Masling worked Legislative Update in the Civil Rights Division, DisabilityRights Section,U.S. ChairmanMichaelBilirakis(R- Department of Justice, where FL), House Committee on shelitigatedcases under ADA. Commerce, Subcommitteeon Health and Environment,held International News a hearing on H. R. 2020, the Medicaid Community AttenForeign Policy dant Services Act (MiCASA), a n d Disability on March 12. House Speaker NewtGingrich(R-GA),House NCD representatives met Minority Leader Richard A. with Deputy Assistant Sec'

can Disabled for Attendant Programs Today (ADAPT) were among those testifying. Before the hearing, ADAPT held a press conference and rally in front of the Raybum Building. HUD Update The Department of Housing and Urban Development (HUD), in partnership with Harvard University's John F. Kennedy School of Government,announcedthe Community Builders Fellowship program. The purpose of the fellowship is torecruit andprepare a new generation of lead-

embassies and other government-owned buildings overseas and in the United States. Representatives of the Department of Justice and the Architectural and Transportation Barriers Compliance Board (Access Board) were also in attendance. Physical access to these overseas buildings is governed by the Architectural Barriers Act, which is administered by the Access Board. Ms. Davis reaffirmed Secretary Albright's commitment to ensuring disability access at U.S. embassies abroad and reaffirmed the State Department's desire to attract qualified indi-

A Quality Life Through Independent Living Newly Constructed Barrier-Free Housing 24 Hour Personal Attendant Care Accessible 'Ikansportation Coordination Comprehensive Care

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he Crossing Bridges Program teaches kids to respect themselves and others through fun games and speakers. Eighteen classrooms in five schools participated. The twenty-week program covered information about many people withdifferentdisabilities, ethnic cultures. HIV and AIDS, the history of our ancestors, power and equality, and some classes had a lesson on homophobia. We asked some students which of the lessons were their favorites.

a differentjob in the game. It was either to catch the slaves or help them. It made you feel like you were really a slave escaping from a plantation. Crossing Bridges helps you learn about the past and maybe what the future will be like as people change in the way they respect eachother. It alsohelps you learn more about yourself.

The students of this project want to thank the St. Paul Companies,Norwest Foundation, US West Foundation,ISD 197,TheMinnesotaEducation Association and Golden ValGraham's favoritewas thescarf ley Microwave for making this game. In this game welearned program possible in our how to resolve problems with- classes. out getting in trouble. One Special Projects person guards a scarf, and everyone else tries to take it away. The person who takes A 6" and 4" grade class at St. the scarf supposedly insulted Paul's Webster Elementary the original person. Then the and two 5" grade classes at original person stands up for Friendly Hills Middle School themselves by talking to the in Mendota Heights enjoyed a person and that person finds a reciprocal relationship. The students wrote to each other nice way to apologize. and visited each other's Jamilyn's favorite thing was schools. the Underground Railroad game because it was fun but at Through a collaboration with the same time it helped h a Avodan B'Yachad, Service learn something

how

Jamilyn Coleman

Graham Higgins

A video, "Eliza' s Friends" was produced for use with St. Paul School students to help break down stereotypes about people who are gay and lesbian. AN W e b s 9 4" <gaders received k m n s on homophobia.

the past

different way and some people's viewpoints about society today. The game involved everybody and everyone had

5U graders about blind culture and guide dogs.

viduals with disabilities into the foreign service. . This bulletin, was gather by National Council on Disability (NCD)! It is free of charge, availableinalternativeformats, and on the Internet http:// www.ncd.gov, bringing you the latest issues and news affecting people with disabilities. Please write.,fax..ore-mail (mquigley 9ncd.gov) your comments to Bulletin Editor Mark S. Quigley.

WorM is a project of the Diversity Accessibility Resource Collaborative (DARC)and an initiative of The Volunteer Center ofst. Paul.

Together, a 5" grade class at Jamilyn Coleman and Gra~ e b s t e rand two 5 I h grade hamHig-gins,6'l'Gradersfrom classesfromTalmudTorahmet Ms.Diazde Leon'sclass, Web10times fordiversity trainings ster School, St. Paul. and tutoring of two 1' grade classes and one ~indeearten class at Webster. Talmud Torah invited the Webster 5" graders to their school for lunch and a presentation on THANK Jewish culture. Two trainings were held, for teachers from Stillwater schools and st. Paul ~chool's C ~ n ~ m Gmund on Project. One training was held for staff at Theus Corps of Engineers.

PUBLIC NOTICE

This will serve as notice that applications are now being accepted at 2 100Bloornington Apartmentsf o ~ allqualifiedSection8 applicants. Eligibility basedon handicapped and/or disabled status plus meeting Section 8 and selectioncriteriarequirements.Applications accepted between 9:00 a.m.- 4:00 p.m, Monday thruFriday at2 100BloomingtonS. Minneapolis, MN 55404.

YOU, G 00 DW( EASTER SEALS,

~D $TR " IBUTl A N G~

May 10, 1998

Access Press

S ~ o r t sBeat

Minnesotans Compete Cuts In Special Education Internationally

egislators C U funding ~ for ferences between state and Chair of the House K-lZmuspecial education in the federal laws and regulations. cation Finance Committee, stated it was her mission to District Closes have the state pay for school SpendingGap -

by Craig McClellan and Luke Pederson

fromcanada, Brazil andMexico. The top three finishers from the tourney will go on to compete in the 1998 Gold Cup Champion-

effort to reduce what they see eating students with special ~d~~~~~ groups as skyrocketing costs. needs. According to Jim strongly opposed giving a Grathwal, a lobbyist for the biank check to school districts

****

Team USA has numerous Minnesota connec- 55413,orEmai1: cml7@skypoint.com tions. There are four Minnesota Rolling **** Timberwolvesplayers on the squad, and Team USAis coached by Timberwolvesplayerlcoach Deb Sunderman. Sunderman was also head Stats, Standings & Stuff coach of the 1996 U.S. Women's Paralympic Timbewolves player is Christina Ripp of WI. 1. 2 "We have some new, unproven athletes, at 3. least international wise. Our veterans need to 4. step up and show some leadership on, and off, 5. thecourt," said Sunderman. "We'll belooking 6. to establishdifferentcombinationsand notrely 7 on any one person. We want to spread the 8.

NOR GER USA JPN RUS SUI ESP

13 12

8 16

13 13

cost of special education, despite a nation-wide recognition for it's progressive quality of care. Among other things, the billrequiresthatthe

and what is reimbursed by the State. Wearing a "Don't Litigate. Mediate" button, Arc MinneGrathwal said theDistrict gets sota Director ~~b Brick told money from the State in three the 100 or so people gathered

Lower Standards

acompensatory special education fund and a abilities to sueschools. "Make fund whichcovnomistakeabout it," Bricksaid.

34 41

AUT

has ywxpf eiperience, nationally and internationally She is l i b sm e x t e d H t 4 m Lad coaching staff on the court. Kittock is one of the team's inside players anti win be depended Amdean Sled Hockey Association

Sunderman said Johnson is a multi-skilled player, and can hit from inside and outside. She is a pure shooter. Ripp will be making her international debut and will be one of the fastest players on the court.

Web Pag Courage Contact: TobeBroadrick Phone: (612)520-0479

Team USA are as follows: Ann Walters (North

The 1998 K- 12EducationBill

Shooting Stars),TeresaBrandenburg (Univer- Web Page: httpUwww.usewha.org sity of Illinois Fighting Illini), Jamie Danskin Email:hockeyQusewha.org (CasaCdinaShooting Stars),RuthNunez(Casa ColinaShooting Stars),SusieGrimes (Western National Grizzlies), Cecilia Perkins (Bay Area Meteorites), end GinaMcWilliams (Lady Texans). American Wheelchair Bowling Association Canwt: GeneralInformation: (954)49 1-2886 +*** Email: bowlawba@juno.com Electric wheelchair hockey will begin its sec- Web Page: http://members.aol.com/ ond regular season in Minnesota. The U.S. bowlerweb/awba.htm ElectricWheelchairHockeyAssociation(U.S. cant. on P. 12. EWHA) will run the local league Saturday afternoons. May : through A U ~ U S ~The . Clash, led 1 BUILDING BRIDGES ' by1eawMVP'c3h*Kram.vi11 Helpingpeoplewith cerebralpalsy and oiherdisabililook to repeat their undefeated ties achieve independence. season. Regular season begins May 9. Late sign-ups will be acUNITED CEREBRAL PALSY cepted until June 27th. Contact (612) 646-7588 the U.S. EWHA for more information. (see resource guide). YOU see people. We see promise. '

spa -

The Canadian Electric Wheelchair Hockey Association (CEWHA) will host the Canadian National Championships in London,Ontario,May 15-17. The

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May 10, 1998

Access Press

Beyond Our Comfort Level

LhIPU)YhlEW ADS ARE $14 PER COL. INCH; M A Y LY IS THE DEADLINE FOR THE JUNE 1U ISSUE;. Mall t C

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n experiential education a trust fall is letting go and falling back trusting the person standing behind you will catch you. I did a major "trust fall" on July 25,1997.I was sea kayaking at the Apostle Ishnds on Lake Superior.Three years prior to the day, July 25, 1994, I had been in an ambulance on my way to the hospital following a stroke.

KTCA-TV, one of PBS's lead-

is looking for a person with

Contracts and for a new children's science show. Person must have a

ence for K-8, the new National shore with a spectacular sun-

Wilderness Inquiry, a Minne- people. They were from ages apolis based non-profit organization providing outdoor experiences for people of all ages and abilities*made my adventure possible. 1 had to celebratemy stepstoward healingmy chronic health issues. I chose Wilderness Inquiry because their philosophy fit my needs. I could share the time with people who enjoy peaceful outdoor experiences. I wanted to step out of my normal world toap1acewhere"time is measured by the sun and movement governed by the weather". WildernessInquiry gathers a diverse group of participants - including - a few persons with disabilities- fora time tolearn together. Participants are all expected to contribute to the experience, in a pectful way, to the best of t eirability

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