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44Alwaysdo right this will gratii some and astonish the rest" -Mark Wain
Chemical Sensitivity Page 7
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disabilitiesin thecountry. Our improvingourqualityoflife we disability,either by accident or Center down. After consid-
Health Care: Continuation I ILetters To The Editor. . . . And Conversion Rights either kind usually takes more strength and courage than I can muster. It is as if I'm trying to walkthroughavatof concrete. I know I have to keep struggling. It's a matter of life or death. But it is so very difficult to lift one foot and put it down in front of the other.
suggestionsare useful for mild depression,.even clinical depression. She'sright. Depression is almost always treatable. usually with the right antidepressant. But in its severe,recurrentform, when (having tried them all) the most antidepressants can do is to provide something of a safety Avoid alcohol, O'Brien says. net, it may be a life sentence. Well, duh! I have an addiction to prescription drugs (in sus- Concentrating on what sometained remission). In the past one is saying or trying to read I have chosen oblivion rather a book are difficult .and can than dealing with each day's become impossible in the travails, and sometimes alco- depths of depression. Doing hol looms as an attractive o p something as simple as heattion. But1 live with the wreck- ing a bowl of soup can be overage addiction (and depression) whelming, especially if the have left my husband and chil- pantry permits a choice dren. Although he is in his late
Dear Editor:
by Tom Brick
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everal years ago, the State. of Minnesota enacted a law whichallows an employee, atthe time ofaqualifyingevent. such as being laid off, an opportunity topwitch from th,e group healih plan to an individual plan; the individual plan must be issued without any preexisting condition limitations, if the individual has had continuous qualifying coverage under the employers plan. The premium for the conversion plan, from the employers group health plan to an indi-
vidual plan must not exceed 90% of comparable coverage by the MN Comprehensive Health Association (MCHA). The alternative for persons losing their employment has been continuation coverage of 18months, or29months (ifthe person has been determined to be disabled by the Social Security administration). This arequirement of a federal law known as COBRA. Continuation coverage under the COBRA law isusually moreexpen-
I MINNESOTA STATE COUNCIL ON DISABILITY The Council on Disability has established aList Server for e-mail information and discussion of disability related issues.
sive than the conversion coverage under the Minnesotalaw and the guaranteed coverage is time limited under the continuation under COBRA.
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Since its enactment, health plans have had various interpretations of the requirementsoftheMinnesotalaw. In October of 1997,The Minnesota Department of Health (MDH) issued a directive that an enrollee of a fully insured plan (selfinsured,ERISA,plans are not subject to state, law) must be offered the choice of continuation or conversion coverage. An individual who initially elects continuation coverage has the right to subsequently choose conversion coverage without underwriting before the 18 month continuation coverage period has expired (thedirectivedidn't address the situation for those who are eligible for additional continuation for up to29mths).
To subscribe to the list all you have to do is:
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To: "Majordomo9mail.state.mn.us" Do not enter anything in the subject line In the text box enter: Subscribe mndisability You will receiveamessage back; entertheauthentication information in the e mail you receive and return it to the majordomo server to confirm your desire to be on the email list. .,%
If you have Lny question on this call Tom Brick at the Council on Disability,296-3478,l-800-945-8913(V/ITY), 296-6785 (VKIY).
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Co-FounderIPublisher (1990-1995) Wm. A. Smith, Jr. EditorlPublisherlCo-Founder Charles P. Smith Scott Adams Cartoonist Presentation Images, Ellen Houghton Production Editorial Assistant Cindy Bordeaux ACCESS PRESS is a monthly tabloid newspaper published for persons with disabilities by Access Press, Ltd. Circulatibn is 10,000,distributed the l ( r of each month through more than 130 locations statewide. Approximately 650 copies are mailed directly to political, business, institutional and civic leaders. Subscriptions are available for $15/yr.
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Editorial submissions and news releases on topics of interest lo persons with disabilities, or persons serving those with disabilities, are welcomed. Pard advertising is available at rates ranging from $14 to $18/column inch, depending on size and Ircqucncy. Classified ads are $8.00, plus 35 centstword over 20 words.
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"Even walking ... may be ... beneficial," O'Brien tells us. I know that. I try to do that sometimes. But I am surrounded by steephills-some are geographical and some exist only in my mind. To climb
Advertising and editorial deadlines are the 30th of the month preceding publication; special scheduling available for camera-ready art.
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Access Prcss is available on tape. Call M N State Services for the Blind, 642-0500or 800-652-9000.)
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Inquiries should be directed to: ACCESS PRESS 1821 University Ave. W. Suite 185N St. Paul, Minncsota 55 104 (612) 644-2133 Fax (612) 644-2136
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failed to pick him up from school because I'd been hospitalized. Andheonly learned about it when his father came home in the evening.
week or so ago. Although doctors deny it, I think the electro-shock therapy I've had has contributed to memory problems. In any case, I have a bad case of CRS 'Take care of yourself. Em- (can'tremembershit). phasize a healthy diet." These are goals I would like to reach Ifyou want to know something someday. In themeantime the about depression, read someonly food that isn't repulsive thing thicker than a pamphlet. to me is, oddly, doughnuts. And talk to someone who's Now that I have ulcers, I get been th sick from doughnuts, too. Carol Knapp Mahnke O'Brien's well-intentioned
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Now that the right of aconversion policy has been finally established, already, a bill is expected to be introduced by a health plan or plans to require that the continuation rights must be exhausted prior to eligibility for conversion coverage. This would usually result in a higher premium payment under the continuation policy and less awareness by the consumer of the eventual right to the conversion ~olicv. . .
Maybe it just caught me in a bad mood (a fairly large target for someone with severe chronic depression), but I didn't much appreciatethe article by Suzy Sunshine (AKA Katie O'Brien) in the Nov. 10 issue of Access Press. There is nothing in this article indicating that O'Brien has a clue as to what it is like to live with a suffocating,life-sapping illness that makes getting up in the morning an insurmountable challenge. Taking her information from a pamphlet - a pamphlet ?!?!, she tells us that regular exercise helps to control depression. Right. Let's all lace up our cross-trainers and hop on down to the gym for a brisk hour of aerobicexercise. These icons of fitness, who probably run four or five miles a day as well,are nomore real tome than areRocky andBullwinkle. And I am every bit as likely to join their ranks as I am to merge my being with a televisioncartoon feature.
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nother time sensitivelaw first enroll for benefits under is the right to a ~ e d i c a r e Medicare Part B. SupplementPolicy without underwriting,or on a guaranteed Three years ago, a second proissue basis. You have the right vision was added to this Minto a Medicare Supplement nesota Statute, upon the urgpolicy, on a guaranteed issue ing of disability advocates. basis during the six month pe- This provision entitles a perriod beginning with the first son who is or was previously day of the month in which you enrolled in Medicare Part B
due to disability status, is eligible for another six-month enrollment period beginning the first day of the month in which the person; has attained the age of 65 years and either maintains enrollment in, orenrolls again in, Medicare Part B. (Minnesota Statute 62A.3 1, Subdivision I h)
I r l SPECIALIZEDTRANSPORTATION I
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Board 'RestoresFunding To DisabiLi.1 Programs by Commissioner Peter McLaughlin
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his year's budget process at Hennepin County was particularly difficult. County staff proposed budget cuts with skewed priorities that would have adversely affected many people, including those with disabilities. In the end, however, the County Board passed a fiscally responsible budget that preserved and strengthened our recent emphasison prevention,early intervention, community buildings, and assisting people to work to support themselves and theirfamilies.
which provides long-term employmentservices toclients, such as counseling, . vocational evaluation, training and supervision $35,000 to Accessible Space,Inc.whichprovides, through its Service Plus program, intensive case management, transitional livingandsupportivehousing services to client with s ecial needs
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the information is available at Minnesota's impressive outwebsite: www.wildernessin- door environment. In so do' quiry.org/mnparks. ing, we haveincreased the likelihood and ease with which The Guidebook has been de- people (especially those with signed to provide the informa- disabilities)visit themany and tion necessary for folks of all varied parks within the state. abilities to make informed choices on where to go 'in
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Minneapolis Community and TechnicalCollegepresents the 8th Annual birthday tribute to Dr. Martin Luther King, Jr. on January 15, 1998. Featured
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guest speaker is Rev. Bernice A. King. Berniceis fastbecoming a leader of tomorrow^ She challenges each of us to look beyond our own concerns and
their dreams. The event is at 7:00pm, Basilica of Saint Mary, free and open t public.
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$265,000 to RISE, Inc. which
~~McLaughlin take pride in. We did so in a fiscally responsible manner anddidn'trely onanyaccounting gimmicks. Our budget did not compromise either our future or the County's AAA creditrating. .
skewed priorities inherent in those recommendations by adoptingover50amendments that re-priaritized the county administrator's recvmenda$150,900 to AccessAbility tions into a budget tbat wecan
New Thrift Store Arc of Hennepin County will open a new, expanded Value VillageThrift Store at the Midland Shopping Center (Medicine Lake Road & Winnetka
I am especially proud of the amendments I brought foreword: they helped the county save money and maintained crucialpublicservicesandour commitmenttopeople.
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process,~-\6(k@pi~bed with a budget &at responds to fiscal realities and demonstrates a commitment to help people in need, including our friends in thedisability community.
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As parents of an autis@iz.&dd,. they knowjusthow hardit isto. shop for, and make an k d l i p n t decision on an item aa expensive as acomputer while you are trying to keep your child incheck at thesame time.
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award will be presented at the 12thAnnualCity ofMinneapoTis King Holiday Celebration on Friday, January 16, from noon to 1:00 P.M. ar the Hennepin County Government Center on the Public Service Level. -
Honeywell Heals Anti-Violence Campaign, Fairbanks The CP worked with corporations award' based in south Minneapolis tion cx individual who makes including Allina Health Sys- significant contributjons in [ems, ~ b b o t tNorthwestern civil or human rights. FollotyHospital and Honeywell to ifi2lhe-program, the Minnkdeyplopaitralegic plan to pre- apolis Commission ctn Civil jept violence and crime in the Rights will host a reception in d . theRev. Dr. MartinLuther King j i Fairbanks became th; ~ i ~ m l S p r P e w ~ hAs~part live Director of the American &&mnt&%initjative, Jr. c o n f e r e n a ~ o o d . 2 3 9 ~ i ~ Indian Centerin 1994. Under ~airbanffs;2' her leadership, the American munity eld Indian Center continues to ef- finding inves fectively address the needs of ing a criminal incident & the American Indian commu- helps thecommunity take steps sign also be present. Far mere innity. In additign tolizwlingthe toward healing. . Center, Fairbanks hU k e n a fomation,p3easecal1673-2339, ''rireless supporn" of dkr C3tyCouncjlViceh.esidentJoe 673-2044W3. organizatiw such a s %B &mat and poet&o~ytq&r~' " ~ ~ ~ l~ ~1 IJ(I jl ~ ~ . h*an Indim OIC, rhe In- h e h d c ~ e ewill piesent re, -
St. Paul, Minnesota 55114 At Hwy,280.& UnkersityAvenue
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(612) 644-9770 fockec &w;.d'o'ih &IIf0 the p ~ b ! ~ ~ . .
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OMPLETE ME~~CALSLIPPL~'VEN ,
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repair serviee Walker&/cam,.~ r 1 1 t 6 h ~ . ~athroahsafety am . Diabeticsupplies lnco~irwnVUro~Ecal supplies
customers. Free UPS .
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Computer Company Offers. Service & Low Rates tion helping you &ciii what offered at the rateof$25.00an typeofcomputerwiUnaes&~hour. needs, whatprogramsyoumy want on or nesd o n ) ~ a w r e m5d u l l wamanty and puter, and train you on basic ichkb &miceon the eomcomputer functions when you puters they bui.ld as no ex purchase a computer through charge. T~rijaalso has a disMAXimum P.C. at no extra ability and at times uses a expense. . wheelchair, she knows haw hard it is to get out and about The senices don't stop t h e , when row have shyid FimiTonja andWm abo &ez dis- tations. Herhsbindkasbeen counted in home repair ser- ahuge help@her and she feels vices forexisting~omputers to the need to reach aut to those elderly or disabled indiviclids who do not haw such won&r; and parents of disabled' chib &I support. dren. The normal f& for Ms .,-.I - 4 home serviting is $50 to $100 ~ .-- % ..-. ~ M- ~ uaalt~ an hour. 'IAeseserviceswiilbe 'F612J331-799@.
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dian Family Services, and the flections on the continuing IndianChildWelfare~aw~in- significance of Dr. King's ter. AmemberoftheRed Lake life and work. Yoptg from Band of Ojibwa, she acti"e.1~ Park~venue~etho&s&%&m works to uphold weaty rights. Corps ar\d Ramsey ~nterni- ,
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AXimum P.C. Inc: opened its doors in October 1997 with the goal of providing high qualiky, low costcomputers.Tonjaand Ron Glass, owners of the store are now offg;rjsg discount rates and low p r i e s to the elderly, disabled, and parents of children with disabilities.
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Civil Rights Award Recipient: Frances Fairbanks
he Minneapolis Commis sion on Civil Rights will present the annual Award for I led the effort to re-prioritize Outstanding Achievement to county actions and simultane- Frances Fairbanks, Executive
poned non-crucial capital expenditures, increased federal government funding of Medical Assistance to the county, kounty was able to
Avenue) in New Hope. Pro- zation Arc o ceeds from the store benefit County. For information and people withdevelopmentaldis- store hour~call535~7972. (.I* -c1, abilities and thpir families ., 'a, , ;. thfhugh the nonpro"fit 6kgan'i'I *
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hard to ensure that
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Wilderness Inquiry has produced theMinnesota Guide to Universal Access in the Outdoors, the world's first internet guide touniversal access in parks thoughout astate. After inspecting hundreds of facilities and trails at parks throughout Minnesota, all of -
million fewer dollars. The re~ i i ~less &an e the, afion, was used to I County priorities.
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Parks Guidebook Available On Web I
Celebrate The Dream !
$158,000 to Borderline SILS (Semi-Independent Living Situations) which provides I am pleased to report that the community independent living final budget adopted by the services for people with borCounty Board restored full derlin,e mental retardation funding to several important programs which assist about In passing this year's budget 250 people in the disability the Board of Commissioners community: RISE, Inc.,Bor- responded to difficult fiscal derlineSILS,AccessibleSpace pressures brought about by a Inc., and two long-term shel- combination of a reduced tax tered employment programs, based and rapidly increasing Opportunity Partners and costs for out-of home placeAccessAbility. I was im- ments. Hennepin County pressed by the superb lobby- started the budget process $9 ingeffortthatwasrnounted by million,in the hole because of manyinthedisabilitycommn- actions by the state. Despite nity on behalf of these critical robust growth in the value of
support necessary to. enable clients tobe employed within t b i r ;facilitybroutid thecommunitv
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On Mental Illness
ultural Or Ignorance? by LeAnne Dahl firstcentury,I was begin-
in the community. It became clear that it evidently never a land of freedom where people with disabilities can
onvenience and ease, ried her?"
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ere bothcaught offguard the derk began asking some r8t$;ii?~rsonal 2nd pointed cpehons of my husband. They were as follows:
If this is the case, then she
was hurt and upset. A range of emotions struck me all at once from anger to pjty for Larry and myself.
magine you are told to forget your hopes and dreams because you can never be expected toreach them. Imagine you are told to lower your expectations and goals for life because you will never be able to liveaproductive life. Imagine you see your disability mocked on television, in movies, and on the radioon adaily basis. When you have all of these firmly in you imagination, imagine trying to find peace, self-worth,dignity, and hope in your daily life; when you not only have to deal with all of these, but are also shunned, misunderstood, and feared by the society into which youaredesperately try-
ness establishment that needs our assistance in educating theiremployeesonhowtotreat individuals who haveadisability. However, until this takes When you have that all firmly Yet, when I final had a chance place, it's up to us to be the tucked into your imagination, to calmdown and rationalized teachers in our own commuyou have a slight glimpse of daily life experienced by myself and many others like me who have a mental illness. to this whole incident.
respected for who we are.
We'veall heard thetermssuch as "crazy", "nuts", "de-
come than the illness itself. A brochure I read afew years ago said it well by stating, "It's been a year since I came home fromthehospitalaftermybreakdown. Myfriendsstillhaven't recovered."
the benefits we have the potential to bring you.
Consider this: What would classical music be like if Ludwig Von Beethoven, Wolfgang Amdeus Mozart, and Robert Schumann had Nowthinkforamoment:Men- each never been allowed to tal illness is twice as prevalent compose, because they each asalzheimerdisease,six times had a mental illness? as prevalent as diabetes, and five times as prevalent as mul- What would the SistineChapel tiple sclerosis. Consider the belikeifMichelangelohadnot fact that more hospital beds in been allowed to paint because this country are occupied by of his mental illness? Who people who have a mental ill- would have come up with any ness than by those who have of the inventions of Thomas cancer, heartdisease,andlung Edison, if his mental illness disease combined. One out of had kept him from accomplishevery four families in this ingall thathedid? Whatwould country alone is affected by thiscountry belike ifAbraham mental illness. Lincoln had never been allowed to become President because Basic truths need to be ac- of his mental illness? knowledged: People with a mental illness are human be- Human potential is limitless, ings,not animals, imbeciles,or whenallowed full expression. sub-human. Weare notadiag- Toattempt torestrict someone nosis, we are people with the on the basis of a disease is same hopes, dreams, desires, therefore one of the greatest and goals as the rest of the wounds you can intlict upon
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ential toachieve these ccpmcny
Guthriekb, M~pls
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who are blind. Access to The-
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viduals who are Deaf or Blind 214. Wed 7:3& "Playby ofthe .for selected performances by west& *orld" QuthrieThe- selected theater companies in Hennepin,Ramsey,and Anoka cdunties. For reduced prices
VSAM (332-3888) for further
Available 24 hours per day
24 Hour Personal Attendant Care
Specializingin thecareafchildren* AdultsoElderly
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We provide Personal Care Assistants Home Health Aids Homemakers Live-in Caregivws Nursing
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OurRehabilitativeServicesinclude: Physicall Occupational~lSpeech/Respiratory Therapies PCA Provider Organization
the
By the way, wh,
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- Reliaion & Disability
J m w i q 19-, 1998
Access Press
Parishes Made More Inclusive
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Hello Nicole:
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by Mary Jane Steinhagen ithintheCathollccomrnunity I work an advocate fortwith people with disabilities to insure their having parish access. Assistance given ranges from solving physical access issues to implementinginclusion Strategies. Since no overall pla" exists for making our parishes inclusive,my work hasalways been done on an as requested basis. The randomness ofseradecivice requests sion to be more intentional in making our parishes more inclusive.
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In the summerof '94,five parishes were recruited to pilot an intensive approach to full inelusion. Thesites wemamixof suburban, core city and city parishes. The suburban parisha have day schools with the growing numbers of families; the city is adult focusedan$w i n w c i t y parishes have d& po@ations. Each established a disability advocacy committee composed primarily of people
stituencies, varieties of disabilities and how the ADA (Americans with Disabilities Act) impacts churches. Committee members received SUPporting resource ~ c k e & .
Educatisnaleffortswerecommon among all parishes. Most ran br~efitemsundera heading Disability Awaren-Comer in the weekly bulletin. Articles with pictures ran in parish newsletters. A series of SunN ~ l ~ k s t ~ p pafaczim l a n was day mwoing adult education mandated. D @ @ c m ~ W h d i dforums featured videos and an initid cawrehenshe self- speakers on disability issues. study; the others tackled obvi- One parish had an in-service ous problems. (The video pre- for staff and the parish council. sentation on the ADA was the Awareness about disabilities catalyst for pointing out areas increased in each parish. needing correction.) Initial projects focused on physical Makingchange isalwaysdiffichanges needed. cult. Creating inclusive and welcming@shx:mrnunities Committee members now no- has its challenges because of ticed the lack of handicapped the historically low parish proparking,materialsoutof~each fileofpeoplewithdis&lities. for people in wheelchairs, the The old attitude of service to lack of assistive listening de- rather than invslhernent of vicd, and the shortage of ac- people with disabilities is ancessible seating in the assem- other resistance to ovsrcome. bly. Doorwidthsandcurbcuts Building a welcoming faith took on signifiCaac;restrooms community isalong-term cornpreviously deemed accessible mitment with no quick fixes. were re-examinedwithincor- Still, establishing advocacy rect signageremoved,Benches committees within parishes is were added forpeople waiting adkalfir~rstepinthechange to be picked UP. process.
ine rime you want I e e k i n ~anvthine out.
nea rurure, tnel
an equ
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Please patronize your Access Press Advertisers and tell them where you heard about them. They bring you your paper.
The theme of these Leadeaehip m s is "N
b 1 u l ~ i ~uach n ~ is $2SbtJbn@w& other apuimtiom to qwmso~d
but also kow we can
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$s~~uary 10, 1998
LEGISLATIVE Work towards establishing stand-alone areas in prisons forpeople withspecial needs, including mental iMness,'developmental disabilities, and traumaticbraininjury. Rewrite the health care power of attorney law to treat mental illness on a par with other medical conditions. Worktowardsthe licensing ofday treatment proV S .
Wg&Clpncbralhbyd -J&@KlW) : .. , ,
Education-UCPM will workto insure that any proposed changes do not negatively impact special educationfunding for students with disabilities.Monitorall1egislativeproposals establishing an education voucher system to determine impact/effectonservices. Work for protection of chil,dren and young adults with disabilities in the education p r ~ c e s q h ~ ~ e x a mall ~ iplong posals f m language changes that migbt negqti~elyimpact on students with disabilities.
Monitor;~adi;analyzdEeny amendments8scurrentspecial I
education statues granting additional authority to hearing officersallowingthemtocarry out hearings more effectively
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Transportation- UCPM will advocate for improved management of khe para-transit system in the of e a ciency and sensitivity training. Monitor legislation pertaining to the creation of a citizencommissionto runthesystem and any legislation introduced to change the current statue to allow for the use of additional funding sources other than the General Fund.
sonswithdisabilities.lhegoal of such programs is to.reduce barriers to employment of peoplewithdisabilitiesthatare cmtedbyexistinggovernment health care policies. Should federal authority be granted, MNCCDfurtherurgestheState of Minnesota to develop a MedicaidBuy-inprogram.
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viceintroducedlegislationproviding for the downsizing of Vasafrom50toabout28beds. LSS will continue to exercise leadershiptoencourageadoption of this legislation, while monitoringDHS development of the systemic approach to downsizing. '
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The National Federation of the Blind Minnesota will focus its concern on the increased difficu]ty in usingmodem techno]ogy for blind persons. Technology is becomingdependent onpicturesorgraphsand~uch of the software is not cornpatible with thespeech synthesizers that is normally used by people who are blind. The NFBM will seek support for legislation that will ensure all technology funded with state money can be used with nonvisual techniques.
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Transit- The Metropolitan Center forIndependentLiving (MCIL)will work in collaboration with the Consortium for Citizens with Disabilities to forward a legislative agenda which will increase consumer involvement in the planning for current and future transit options in the metropolitan area. Work towards the improvementofthereliabilityand efficiencyoftransitforpeop1e withdisabilities.
IndependentLiving-Worktowards educating legislators about the Independent Living MJuar&C . w' r d!k movement and its philosophy. , ,;To increase and solidify the . ' . - . availabilityof independentliv., . ~ ~ e & l ~ & ~ o r t a t i o n ~ ing e r - services throughout the The members of the Minne- vices-working towards in- state of Minnesota. T&ensure sota Consortium for Citizens creased fundingformedically adequate resources are available to promote the continuawith Disabilities are urging related transportation. '
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ating feasibility of pursuing special licensure for Courage -n-Wo*ingwith Residenceand increased fund.other organizationstodevelop ing. ' ; ' .. legislation promoting greater :-. - _. . consumerrole in oversightancW7 . . . P. dimtion of Metro Mobility.;'.' ~, *.. ': .I .~, Monitoring proposals to de-: . .. Signage- To ask the legislavelop other transit options. ture for prominant notification Wo&Disincentive-Courage in all public access buildings Center staff will work closely to accomodate persons with with the Consortium for Citi- environmental illness by rezens with Disabilities(CCD)m fraining from the wearing of promote the Medicaid Buy-in scented products. Notification proposals. Also working with of the application or use of state legislators and DHS offi- pesticides in public buildings. cials on further development of earned income disregard Research- Requesting more . funding and resources bemade to pursue research ofthisgrowCoumge Residence- Staff of ing medical concern and huResidential Services is evalu- man health crisis. ;?.-
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Health Care UCPM supports the passage of any legislation that would allow for the payment or coverage by insurers for products or services provided to the insured including, butnotlimitedto: durablemedical equipment, communication assistive devices, personal care attendant services; and transportation costs for individualswithdisabilities.Monitor any proposals for administrative or legislative changes to the Personal Cwe Attendant W A ) program . '
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Mobility PraductsNehicleMaintenance 612-232-1700 6 12-232-1720 1-800-887-6221
January 10, 1998
Access Press
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NEW MEANING FOR ACCESS? Awareness That Chemicals Cause Environmental Sickness & Suffering 1It.f.
by Toni Temple
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ccess is not just a problem for those in wheelchairs. Those with MCS (Multiplechemical Sensitivity)are alsocovered under the Americans withDisabilities Act but are denied access daily due to numerouschemical barriersin our everyday world. Forthose of you unfamiliar with MCS, thisdiseasecauseshypersensitivity to most chemicals and makes it virtually impossibleto beexposed withoutexperiencing severe pain and distress. Someexperienceasthma, irritability, memory loss, confusion, depression, arthritis, chills, headaches, convulsions, seizures, swelling and other physical symptoms as immediate reactions to exposure. Long-termsymptomscan involveanemiaand bloodclotting problems and even nutritionaldeficienciesandhair loss (similar to the effects caused by chemotherapy). SOit is not just a matter of mere discomfort - exposures for some can become life-threatening and therefore, MCS victims must be properly accommodated. MCS can be caused by either
)5"$-* Prejudice will again take the front seat - if we let it. But hopefully, by education, we can slop it. This disease does nottakemuch, ifany, money to help "fix" what is wrong. Substitutions and avoidance usually will do the trick and permit the disabled person to gain access to places they could not otherwise go. Very recently, the Institute of Medicine published a report entitled "EnvironmentalMedicine and the Medical School Curriculum". This report addressed the much-needed competency based education of our physicians concerning the seriousness of the effects of the environment on human health. Implementation recommdndationsareexpectedto follow shortly. Doctors will be expected to take appropriate detailed environmental exposure histories, including work histories, of all patients and will learn to recognize symptoms of chemical poisoning. But the public needs tobe educated too. A good point to remember is that "there, but for
which may make aroom or of- products and then using safer fice attractive but which are alternatives loaded with pesticides, fungicides and insecticides. 5. Providing flexible working hours to reduce exposures 5. Construction chemicals during peak rush hours and which have not yet "gassed lunch hours, etc. out*'. Newpanels.desks,shelving and furniture containing 6. Providesaferworkareas(i.e., fonnaldehydecanalsobeabig without carpeting, etc.) problem. 7. Educating themselves con6. New carpeting and the foam cerning their legal responsirubber padding andglues used bilities and educating other to install it can be highly toxic. employees ' In addition, carpeting retains toxic dust from perfumes, dry FemiliesandIndivid~Caa cleaning, and other chemical Mep 1. Do not question, disbelieve agents. or criticize anyone who indi7. Fragranceemissiondevices ca&thatcertainodorsorprod(room airdeodorizers,etc.)es- ucts are making them ill. pecially those thatrun through heating, ventilating and air 2 Educate yourself concernconditioning systems. I read ing the effects ofchemicals on in a U.S. Air Magazine article the body-y ou may be that the "cookie smell" in the shocked by what you learn. malls and the "popcorn smell" Many publications concernin movie shows come from a ingpesticidesandtoxicagents chemical! The cookies and areavailablefreefromthegovpopcorn are m.ade elsewhere ernment. but the"chemical smell" isused to'lure" us in. 3. Limit your use of perfumed products and strong chemi-
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miraculouslydisappear! il*i'3~daccess issues for those with " ' H ~would ~ be ~ greatly appre4. Treat others as you would ciated. I would like to provide like tobetreated. Imaginethat educational information to you have this disease. What apartment buildings, hotels, considerations would you restaurants,movietheaters,liwant from others? What would braries, retail stores and other you want others to do to help public facilities on how they you? Then do it! can help accommodate those with chemical ~~nsitivities.. Tips From MCS Sufferers 1. Ask for the considerations ToniTemple, Chair, OhioNetyou need in a straightforward work for the Chemically manner. Injuried, Box 29290. Parmu, OH 44129. 2 Do not apologize for your illness-it is not your fault. [In Minnesota, persons with MCS are represented by the 3. Do not expect everyone to ChemicalInjury Resource Asunderstand immediately (in- sociation (CIRA) of MN. eluding your family or your CIRA,origindly incorporated best friend) as Twin Cities H.E.A.L., is a non-proffklorgadbation with 4. Try aot totake any negative about 209mmtYets, and procomments personally. vides l ~ u p p &vices ~ ~ k and educatibdo tho& affected by 5. You do not ever have to Me$; CIRA,servesas a vital defend yourselforyourillness. link in the r e c o w of people Make calm statements such who have been chemically inas, "You have obviously not jured and in the building of a been educated about this dis- healthy community through ease. May I suggest some networking and education. For reading materials which will info. on CIRA, call Deah Cain familiarize you withMCS?" at (6 12)643-4220.1
were to strike you tomorrow.
be visually perceived (wheelchairs, crutches and other tangibleevidence),MCS is sometimes not quite so obvious except in extreme cases when those afflicted must wear masks or respirators. More often than notMCS victims are ridiculed rather than accommodated and spend precious time and energy "defending" their illness. As you may recall, even the national news mediamadejokes about Marin County in California where a
1. Maintenance chemicals which includestrong cleaning disinfectants, carpet shampoos, waxes and polishes, etc. Somemaycontainbannedpesticidesasinertingredients.(Inert ingredients are not required to be listed on the label.)
and laundry soaps, fabric softeners and dry cleaning.
EmploywsCanHelp 1. Providing extra ventilatio withfreshair 2 Cutting way back on the use
2 Cigarettesmoke 3. Remodeling chemicals room withsomeonewithMCS. (paints, wallpapers, solvents, glues, varnishes, etc.) 3. Completely banning any and
. fiI$@ is the m proudsp~!!9ff~ 1 t i I
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January 10, 1998
Chatting On The Internet
Access Press
by Carla Maclnnis Rockwell
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nternet Relay Chat (IRC) what is it, and how might it help persons with disabilities? First of all, IRC is a means of Internet communication. Unlikeelectronicmail (e-mail),IRC is immediate "conversation" in a group, or with one individual in private chat. To download a popular IRC program, go to http://www .micr.co.uk for the latest version mIRC and choose the one that is compatible with your computer system and you're half way there. It's very easy to do, and once you're connected you'll experienceawhole new dimension to your computer and Internet use. Once you've downloaded the program, set itup(mirc.exe). Thatdone,just follow the rest of the instructions - you'll be asked to provideabit of information - your name, your e-mail address,and a nick (nickname). The nick is what you call yourself when you're on a channel, and a channel is where you will be "chatting" with people. A list of servers that provide the n your screen. Choose the
ing more about the disease and how to cope with it. A woman with the nick "motie" is often there, and I pop in to say hello, and the immediacy of the responses with IRC communication is very helpful. "motie", along with some of her friends, have exchanged recipes with me, and I with them. It's great fun!Also, given my interest in dogs, particularly Cairn terriers, I hang out on #dog-cairns on STARLINK.There,Ilearned a lot about a new medical condition that has stricken one of . my furry friends. t'
Sometimes, I lurk on other channels to gather opinions as to what the able-bodied population thinks about the various technologies and how they benefit persons with limitations. Many have been most generous with their time in answering a few questions. The general consensus is that Internet Relay Chat can be a valuable tool for persons with disabilities. I was especially pleased to see how aware and interested young people (1 218) are about the needs of persons with disabilities. I stumbled into some juvenile channels where there was very little stimulatingconversation -just a lot of logging on and logging off - to see what the channel was about. I threw out the question and was surprised at the response. One has to be careful, though, not to allowIRC to take tlkplace of humanconhct. Used wisely, it can be a tool that will broaden the scope of daily life for persons who are not able to regularly interactin the mainstream, providing readily accessible interaction with human connections.
to the benefit of being able to discuss an immediate emotionalcrisis.Being able toshare in a non-threatening environment makes it easy to be open about feelings. And some com-
ot off the press from the A bit about the survey. Be- advocate for themselves in
done "in the spirit of (what At the end of the survey, BPA they call) Participatory Ac- asked for ideas regarding the best disseminationmethodsfor service providers,policy mak-
ion, but opinions can be rather ,
BPA reports, "Many women wrote in ideas about national
is their primary caretaker. Jill
the value of IRC. It can be:
tion.
welcome on the channel. He shared some of his popups with me - little phrases and such that can be utilized, for a bit of colour, while chatting. Another regular, "beehunney'" also shared some of her pop-ups. In the mIRC manual are instructions on lmw to create your own.
A stepping stone for prac-
in that arena. An opportunity to network and meet friends/professionals, and learn about possible career paths. ~~~~~~~~~i~~~~~~~~~~ about the Internet and computers in general. A possible tool for employfor merit those who are 'homebound' or have a need to telecommute.
HOUSING AND PERSONAL CARE SERVICES Accessible Space, Inc. .(AS11 offers subsidized one and two bedroom apartments for individuals with physica-bfli*~. We have housing in the Twin Cities metropolitan area, St. Cloud, Brainerd, Grand Rapids, Hibbing, Austin, Marshall, Willmar, and Duluth. The apartments are fully wheelchair accessible and each building has a central laundry room, large community room, securedentry and an on-site caretaker. 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 information call (6 12)645-727 1 or (800) 466-7722. For services or housing call Leigh, for employment as a personal care attendant call Sean or Courtney.
u
by Karen G. Stone
was combed, e t ~ .
#littleengland is a great channel for clean, friendly conversation. A fellow by the nameofWilliamRendell, from the UK, has been very helpful,
Anothet channel3 visited to learn how people benefit from IRC was the #depression1 channel on Updernet. There, I chatted withanumber,ofpeople who &wed !heir thoughts on how this Internet communication qysbern has helped t h e p Typically, the response was ooe of unanimity with regard
Meeting The Needs Of Women With Disabilities
That abuseand violenceranked est Datelineor 20120 in doing a so high in themindsof somany story..." For women withdisabilities,it women with disabilities does course" thing. For women in prisesme is the low number of findings,BPAisnow develop general, it was a "so-what- responses. It should read more ing a booklet about domestic
sexual beings. So what else is experience, yours truly in- women with disabilities (or if you wo_uuldlike furtherinforrnation about the study), please The painful thing about the contact Susan Haight-Liotta abuse/violence specter of at 1-800-897-0272(voice/TIY) ill goes into the office only womenwithdisabilitiesisthat or at her e-mail address: one or two afternoons each we are often abused or vio- "susan@bpacal.com"Youcan week. 'merehave been weeks lated by the very person on visit BPA's web site at:."http:/ We are dependent/www.bpacal.com" that 1have not been able to go in at all, yet the computer1 inkrnet/faxmachinekeepsme The highest-ratedobjective Karen Stone is a freelance workingveryeffectively.%ike according to the survey wrirerand a columnistfor the ill, I spend a lot of time at the was: "To disseminate infor- Albuquerque Journal. Karen computer, researching and mation to women with dis- hor MSIYldwelcomes letters. writing. The Intemet, and now abilities about how they can IRC have been valuable assets with regard to developing my . craft. Now, if I can find a children's literature, authors channel, I'll be in heaven! Perhaps I should start my own channel !
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So, if you're interested in participating in an innovative communication system on the Internet, check out IRC. Once you're connected, come looking for me. I'm known as "terriermom" on most channels. Or, if I'm feeling really quirky,Icallmyself"lopsided". Lop is a nickname auniversity friend gave me over 20 years ago. It suits because I do walk rather lop-sided! W
933-1 126 ST PAUL 641-1017 ~~W ~rrmMILvDmMONs
Accessible Space, Inc.
mmm January 10, 1998
Access Press
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Housing For The Lifespan Of All People The Center For Universal Design ,School of Design, Raleigh *
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use by one"average'"hysic%l~-bisi ble Sol utioni . .. , . for some can be an added con- routines difficult to mana8e. type - young, fit, male, and venience for others. Universal design is a concepi that will enable older people to adult.Thefactisth&oqlysome A walk firmugh a house with of us fit that description, and universally designed features Theuniversa~lydesignedbath- remain in their homes ai long room is slightly larger than a as they would wish". Cyril F.,, none of us can be described shows that theyare simpl;and conventional bathroom to ac- Brickfield, Former Executive that way fora lifetime. As chil- often almost hvishie. " &en,. as older adults, or as . commodate wheelchair usas. Director of AARP physically disabled people, The front door to the house is The extra space allows more to o c c u the ~ T H E KITCHEN:~nvisible. millions are never average. made easier for everyone to -than one -.Many millions more, Because 'open by 0 n e s i 6 ~ t ~ c h a n ~ e bathroom at the same time so Solutions . . -+ . . %4$ of a broke? limb, serious ill- a lever handle in place of the that, forexample,aparentcan -ness,crrpregnancy,know how' traditional knob.Thisisappre- help achild brush his teeth, or The cabinets also look and unsettling 'it is to try to func- ciated by anyone returning provides space for furnitureor functionlikeconventionalcabition in an environmentthat do home with handsad m s full additional storage. . nets. The difference is that the counters 'can be adjusted ta longer meets their needs. of parcels, a briefcase. grocery bags, a baby and a diaper bag, The offset tubcontrol requires any level to suit users ofdiffer-' The point is, no "average" ac- or a cane, Small children can only about six inches of addi- ent heights. . y' ' tually represents the majority manipulates levermo~easily tional supply pipe. Since the - -- 7 x $ because toomany people have than a knob, as csln those with additionalcostofmateri~sand The kitchen has tht: lusual ap-:r vastly differing requirements. arthritis or other physical dis- labor should not ?any more pii.ncs,>I;.;oveR;gove, and The compositionof our popu- abllitiesthallimitafullrangeof thaq $5 to $20 per tub,,pffset , refrigeratar: .L *A. ,JL. B q e y e r , f b retub controls co,uld easily be- bf~&watw.p a ~ 6 a r sided What is a universal feature? lation is changing. Many movement. Any component ~f a house people are surviving perma"mi sp~,$pd features .,. in all - by;s]$c rkefi&+tor/ freezgFX . tjnd the stovkhts front or side, that can be used by everyone - nently disablingaccidentsand While commonly available in housing. m o u n d controls~bothcanbe regardlessoftheif level of abil- illness and even more ate liv- Europe, lever handles were ity ordisability. Universal fea- ing longer-Itwould seem logi- once used in this country as Theextraspace inalarger bath- used by a grkater number of cal that the spaces built to ac- expensive hospital hardware room need not increase the people. The advantage of the commodatc .this population to benefit busy people overall squam footage of the side-by-side refrigerator/: differ- must, 4by necessity, change moving 'quickly from room to house. The required irrchescan . freezer is that it places b$h the also. room with trays and medicines. usually be "harrowed" from a freezer and +f&@at~r'co. . . Today, levers are popular and closet or utility space. dl- partmcnts within resfitof evelytrjcal receptacles can be The build@ and &sigain- stylish. Avahble fJowl though it b not altvays pos- eryone, eveqship r o dustries have responded io hardware stor& a d bidding .sible to increase the bathroom
by'-making T h e Center's miss improvetbbuillenviron-wore Kdusing usable by more -merit and related products for people at little or no extra m?zi$ksers by impacting polisy cost. univerual design is an and procedural change1- dpproach to design that incorxkrough research, information, porates products as well as -.training, and design as- buildingfeaturesandelements Sisbnce. Thismission is based which, to the greatest extent on the belief that the buik en- possible, can be used by evvironment and products eiyone.'while accessible or 'sh-duld he usable, to the great- adaptabledesignrequiredents -esfcextht possible, by every- are specified by codes or staho n 4 ' r G ~ r d l t of ~ stheir age or d a d s foionly some buildings .ability. TheCenteris goals are and are aimed at benefiting :&I:Increase adoption of uni- only some people (those with vr&d&sign by the building ,mobili.~limitations), the uniPhidustry; Increase adoption of 've&l &sign concept &rgets universal design by product all peopleofall ages,sizes, ar&i manufacturer,Improveeduca- abilities and is applied to all ' buildings. tti'r"fcia w x . -.. ,in universal design. r-
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The Center develops publications and instructionalmateri&)&and provides information, refend& 4technical assistarice to individuals with dis1
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Center was established as t& . Cent&=fdirAccessible Ha@- gripping or twisting k oper- the needs of& than a frac- ity. 1nfaaU i v e n o n - , ing in 1989. In.JanuaqJi996, ate-such as louver or loop. tian of those tbey were meant lockingbvm hdwarsset for thecenterchangcdits n % m e l ~ h i n d l e sliving ; space on one to help and often seem to stig- a pasoage door majr - cost as The Center for Universal De- floor or stair landings big matize agd separate them fur- little as,$lJ. sign lo Gtter reflect its overall enough to acacptlifts;audiblq thqr from other people. . THE BATHROOM: Invismis'sion andits involvement in amd visual alarm systet&sroraccessible and universal de- age space within reach of 60th Universal desigrl succ&ds, iblg $Golrriions ' sign projects in housing, the short and tallpople. because it goes beyond spebuilt environment, and prodcialization. The c(*u;epegea-_ The bathroom wall above the ucfs; Some prsducts and design el- mote's designing e v m & tub appears conventional, but ements are already universal. ucl and buildisg so that it is actually reinforced with .W~RSAC Others can he made so. Manu- everyone can use them to the blmldng. Built into the wall facturersand builders who use greatest extent possible ev- iuelf,blockingallobsthewall "Too offen older of disabled the universal design concept ery f w e t , lightfixtur4shower , KOaccept grab bars when, and ,ppp&live limited lives brgive will design their products and stall, public telephone, or en- i'f, they are needed by the mi-. up theh homes and neighbor- buildings to be as usable as trance, Universal design is a dents. hbods prematurely because possible by a larger popula- revolutionary butpractical leap . -standard housing of the past' tion including children, older forward-in the evoluti~nof The balhtub faucet is located cannot meet their needs. While people, and people with dis- . bujlking and design proce- cl6se.to the outside rim of the. a truly uriiversally usable abilities.' duresi' When designers and tub making it easy for every.house is a goal for ihe future, manufacturers seize this con- one to reach. &I-chai USmany features in houses today "The universal design con'cept cept, universal design will be- ers and othermobility impaired already are or easily can be considers those changes that comecommon,convenient,and people need eo have the conmade universally usable. The are experienced by e v h o n e profitable. trols in this offset positiun. universal design concept in- a s they grow from infabcy to Non-disabled people wilt &screases the supply of usable old age. - Problems related to THE FRONT DOOR: In- cover that what is a necessity housing ky including univer- temporary or permanent dissal feGuresin as many houses abilities are incorporated into BUILDING BRIDGES as possible, and allows people the.concept as well. Because to remain in their homes as all groups are placed within the Helpfng people with cerebral palsy and otkrdisabili- long as they like." Ronald L, context of normal expectations ties achieve independence. Mace. FAIA, Architect and ofthe human condition, trying UNITED CEREBRAL PALSY "Plladuct Designer to justify the importance of (el2) 646-7588 each vulnerable population lJNlVERSALDESIGN:ADefi- group becomes unnecessary." nition of universal: applicable Leon A. Pastalan, Ph.D., Geror c~mm'oi'io all purposes, ontologist and Urban Planner. conditions. and situations. . UNIVERSAL. DF8IGN: The intent of the universal. ~ i i$a~ianale e Liyigg spaces design concept is to simalifv have long been &signed for
DESIGN:
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'The ngpreference a inedium priced over-under of ol ig to age in refrigerator/frwzer*. Forthose plwe;Wis, td@t@Inin their wbo can afford it, the side-byhomes asthey grow older. It is side expands the universaity'. essential that ~ s i d e n be ~ s of a home which designad to ke &~?,gomfort: other universal able, accocO&&&ti~~to -are no-cost or lo persons of all ages but pardeularly to ?hose who are faced Adjustqble height- coun withdiminishmgphysicalabili- could b&ome a tieswhichmakedailydomestic cant. on p.
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speCialjzing in ~ ~ H~~~ 1 1 Care Service Personal Care Assistants Hommakm H~~~ ~ ~ id^^ d & Live-in Caretakers SkilledNursing >
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2010 East Hennepin Avenue, Bldg, #5 Minneapolis, MN 554 13 I
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January 10, 1998
HOUSING
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ture. While in most states they to be ,ithi,, their reach. are only requlred in accessible
&~~~k$YorkandCaliforniahave r.-Mcorporated them as adaptable features in multi-family housing.Althoughinnovative, low-technology approaches exist for providing adjustable 9 height counters, no manufac' turer has yet mass produced them. The manufacturer who chooses to do SO could reduce the cost of the counters, and , . . 2 ~ ~a ggrowing and profitable -. . . m&et for this product.
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tail may cost the price of two pieces of 1 4" and the time it would takeacarpentertocut the in each. 1f individually custom made by a competent carpenter, they should cosr no more than $20 to $ 3 0 pair, ~ muchless ifmass Manufanured and Sold thmugh building suppliers these brackets and rods would cost no more than fixed hardware and could be a proflkx
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." Ohices will vary regionally. Clearly,this universal feature
"The price quoted here is valid could be made standard in all - only in the southeasternUnited housing. - " g s@@s. -. &9 A wider passageway door lead+. .*. '-$.' THE BEDROOM: Invising from the hallway to the >=Q,' c 7 d ~_ ~ b ~' ~-*, S o.l u t i o n s bedroom is another universal $-4 d-. feature that is invisible until --The bedroom clothes closet fumitunmovers awhepJchair rods appear to be standard. users discover its advantage. , ,. The difference isiin the way wide; doors do not iwrease are mounted. Notched ~ c o ~ s t ~ c tcask i o n because the +-* mounting~~oksoneitherwdlextra cost ofthe wider door is '
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allow the rods to be lowered ori raised toaccwmodate people of all heights and ages. Children's closets can "grow" with them. People temporarily restricted to . .., wheelchairs can lower rods
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offset by the hi&y-costof the wall area itreplaces. Introducingtheone-sizedoorby making 34- wide passage doors standard also eliminates the additional costs of planning, ordering, stocking, and coor-
dinating numerous door sizes building owners, the benefits are rentable units that are atfor every job. tractive toeveryone. Finally, a UNIVERSAL DESIGN: the advantage to the consumer is comfortable surA Low-Gost S a l u tian . -- -- L- - ' roundings-thatsuit a lifetime Many 'yniversal features are of changing needs. • h g e inventory of durable medical no-cost options. Others are low-cost solutions that can Statistics derived from such f equipment available by appointment become no-cost with wide- benefit programs associal sespread use. In oursociety, mass curity, disability payments, CALL US WITH YOUR NEEDS production is used to keep and Medicaid suggest a discosts low and toproducepmd- abled population of 46 mil- a Consignment U C ~ Sthat are widely market- lion. Since most affluent disPick up and delivery a able. Because universally de- abled people are not listed on • Rentd~ • signed products make as little the rolls of government proa bting of v ~ n f sor sale • as possible "special", make as grams,many industry people Compact chargers much as possible "standard'*, place this number much • • mass producing design that is higher.Forexample,themanuCheck our our web page both usable and attractive to. facturers of support devices everyone can become a practi- and medical equipment estiwrrrw.equipind.com m mate that there are 80 million cal reality. 61 2-631-9648 or disabled people. Researchers a Universal design benefits the in thedisability field include 888-337-7713 v/tty public and the entire building the families and friends of a y, ,imp buy new if we do not haw h a t you need. industry.Forbuilders,theben- disabled and elderly people efitsareleSSconst~ctioncoor- among those who benefit dination, lower costs, and from accessibility (and there- housing and an increasing "Today's architects address manufactured rather than CUS- fore universal design) and ar- body of how-to-do-it informa- the life cycle of buildings. 11is tom-builtfeatures; fordesign- rive at a figure just over 100 tion.Thcsimplicity ofthecon- time that t h y began to aders, less design time, fewer million people involved in, or cept, the subtle, non-obtrusive, dress the lifecycle of people as compliance and liability prob- directly affected by, disability almost invisible features re- well. Universal design is conlems, and features that can issues. quired, and the potential prof- siderate of the human lifespan become standardized. For its are generating opportuni- and the continuum of abilities manufacturers qnd suppliers, ~omatterwhichfigureisusd, ties for creative innovation of all individuals," Ruth Hall the advantages are larger vol- it is clear there is a growing amongthosewhoproduceand Lusher, Doctorate Architecumes of fewer products. For market for universal design in market housing. tural Candidate.
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