Page 1

"Thereare nofearless people, only fearless moments. " -Peter Hoeg, Borderliners

Nicole on Assisted Suicide - p.5

Access Press Volume 8, Number 2


DOESGOVERNORCARE.? His Words Don't Say So by Charlie Smith, Editor Last month I listened to Governor Carlson give his State of the State address. The following letter was faxed to the Governor;his response is also

As you will see, the Governor only addresses half of the issues I raised, and even then he

cations. By not answering the tough question, I can only conclude he doesn't care. It appears from his letter that putting people to work is "the solution." Sincechildren with disabilities and their families are faced with unique chal-

On February 4"', a combined House and Senate hearing of the Health and Family Security Committee was heldtotake testimony on how the federal cuts to Supplemental Security Income (SSI) will impact families and legal immigrants. At least the legislature is lisample:"Based on seizure his- tening and trying to come up tory, the paid caregiver will with solutions. Let's hope manage seizures 20 minutes the Governor is, too! two days per week. The total time required is 40 minutes Dear Governor Carlson: per week." Obviously, since seizures cannot be scheduled Today, in your State of the 40 minutes a week, whict. Stateaddress, you emphasized wouldbe averaged to roughly "Children first," several times 6 minutes a day, this practice throughout your message. does not insure that a PCA You say you have a real comwill be present when aseizure mitment to the future of the occurs. The Department over- children of Minnesota. looks the fact that the law clearlyprovides for "interven- In July of 1997,3200 Minnetion for seizure disorders, in- sotachildren who receive SSI cluding monitoring and ob- benefits will lose those beneservation...." A person can- fits to federal cuts. not monitor and observe for seizures ifaperson isn't there; Asaresult. thesechildrenwill within the amount of time a lose medical coverage,and in recipient of care is eligible to many cases, this will mean a receive, the PCA can be used 40% drop in family income PCA - cont. or1 p. 3

nlawful Practices educe PCA Hours by Luther Granquist, Disability Law Center The StateofMinnesota's Personal Care Attendant (PCA) program has been successful. The program allows persons with disabilities to get out of nursing homes, or avoid ever going in. Parents get crucial help with theirchildren. These successes occur, to some extent, in spite of how it is administered by the Department ofHurnan Services (DHS). In some ways the program's administration is unlawful, in other ways simply inhumane.

ered personal care service" (i.e. a service for which the state would reimburse the recipient ofthe care), is no longer a covered service. But the contention frequently made by Department personnel, that only "hands-on intervention" is acovered service, is simply wrong andcontrarytothe PCA statute. The statute specifically allows for observation and monitoring so long as that activity is tied to one of the other covered personal care services.

It is a fact, as the DHS health care nurse consultants and One example is seizures. The their supervisors frequently Department's assessment state, that the legislature has form contains the average changed the Personal Care number of seizures and the Attendant statute. General amount of time it takes to insupervision for safekeeping, tervene for each seizure. The which years ago was a '-cov- DHS Bulletin gives this es-

* Under current state law, an estimated 80 percent of the children who lose SSI will still qualify for Medical Assistancethrough a low-income basis of eligibility or because their families are eligible for Aid to Families with DepenWhat do you propose to do dent Children. Oftheremainfor these children and their ing 300 to 700 children who lose their Medical Assistance coverage, manywe expected r Q=mm Children with Special Health Needs (MCSHN) programs. Charlie Smith Editor/Publisher

(source: MN Disability Law Center). The reality is, these cuts in income and loss of medical coverage could result in massive homelessness for a large number of families of children with disabilities.

GOVERNOR'S RESPONSE Thank you for your letter expressing the concern about changes in the federal Sup-

erage and not qualify for other public health care programs.

Minnesota's responseto these and other changes is a fair plan that stresses the value of work. The linchpin is the highly respected and nationThe loss of safety net pro- ally acclaimed Minnesota grams for any child is a diffi- Family Investment Plan. cult situation. Although the While families will have to state cannot make up all lost work, we will provide assistfederal dollars, we are work- ance and support, including ing hard to find solutions to significant investments in the challenge this presents for child care. We are coordinatour children. The Depart- ing this effort with the Minnement ofHuman Services staff sota Department of Children, are studying the new federal Families and Learning. legislation to determine what it will mean for Minnesota's I appreciate your interest and children. I have the following involvement in crafting a information to offer at this meaningful state response to the welfare reform plan as it time: affects children with serious * Based on data from the So- emotional disturbance. Decial Security Administration veloping Minnesota's apand the Congressional Bud- proach to welfare reform is a get Office,the numberofchil- shared responsibility bedren losing SSI in MN could tween citizens. local and state vary from 1,000 to 3,200, government, business, and depending on regulations representatives of the local written by the Social Security systems of care. I look forAdministration. We are hope- ward to a constructive legful that they will use the broad islative session. Together we leeway Congress has given can find a solution that best them in their implementation serves all Minnesota chilofthe law and reduce the num- dren. ber of affected children.

changes will have on children with serious emotional disturbance and their families.

4 1

d.r: I


February 10,1997

Access Press

Since Christopher Reeve.. .I


by Charlie Smith


Interpreter Services -

Duriag the COntrovetSy Over awarding the 1996 National - :OurageAwdtO-*er rCeeve,d i ~ b i l i t ~ aof ing out of touch with the disability community. David Phillips, ExecutiveDirectorof ColtrageCenter, made a cornmibnentm the disabilitycommunity to me& ~ i r the n sts to hear their concerns.

- ~ ) met with a group representing a coalition of orgmintionsgoup a numb of =pding Center's position in thedisability community. Same of these concerns were: Courage Center's isolationb t h e disability community; the Center's a p ~ a h and the use of the medical model vs. the independent A f i e day a* the Reeve event model in in October, Mr. Phillips and number of athet issues were

Thc M i e s o t a State Legislature has contracted with the Ever since that Interpreter Referral Center Mr. Phillips and Ms; Burdick (IRC) of the Minnesota Founhavetalrenthercconcernsvay &jon for Hering soiowl~.Thvhve=ged Spooshto pmvi& sign Inma@ fw Ilonba p a g e and o d interpreting of Board membem and pro- services for the *997lesiSlala gram staff b meet with the tive group fimn the coalition.

attend a committee meeting, or observe a session of the House of Representatives or the Senate, they simply have to calltheIRC leghlativenum&Q612-282-223 1 or d*ly to h e m C sf 612-224-6548 DS melRC Monday through Friday fimn 7-3Oam to 4:30pm.

legislature Tuesdays and Thursdays from Sam to noon through February 27. That interpreter is available to int e r n famy n& that have besnpevrrWlyrequ&&to be ing those times and urn*dl7, for lw min* quests. Piease continueto call the IRC for all legislative inAny time any Deaf, Deafblind terpreting requests and they There have been six a seven orhdofh-g pnon wants A languageintwer is will psgs the interpreter for meetings since the Reeve to mt*fi their legislator, regulply scheduled at the the last mj,,"te nce,s. event; both sides are finding common ground to work on. lk 311 Courage center is committed to change and is welcoming







On January 8th, 1997,the SupremeCourt heard arguments bB i this issue. Should doctors beable to assist people in ending their lives? This has stirred a controversy in the disability community. Many people feel this is the beginning of a slippery slope to legalize the deaths of people with disabili-

Disability Parking1 come share your experiences ana ideas.


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Co-founderffubliiher (1998-1995) Editru/PublkherlCgFo~~nder . Carloonkt , Prodnetion Staff Writers & Editorial Assistants






Dawn Doering & Jeff Nypard

Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. Paid advertising is available at rates ranging from $1 1 to $l5/column inch, depending on size and frequency. Classified ads are $7.00, plus 35 centdword over 20 words.


Advertising and editorial deadlinesare the 30th of the month preceding publication; special scheduling available for camera-ready art. ~ c c e sRcsr s is available on tape. Call MN State *ices



Wm. A. Smith, Jr.

.............. .......... , ..........................Charles RSmith ,..,., .... ........................................... ................... ........................Scott Adams -.,.,."., ..................................... ........ Presentation Images, Ellen Houghton

ACCESS PRESS is a monthly tabloid newspaper ublished for persons with disabilities b Acces Press, Ltd. Circulation is 10,000, distributed the id: of each month through more than 120 Lcationr statewide. Approximately 650 copies are mailed directly to political, business, institutionaland civic leaders. Subscriptions are available for $ 1Styr.



1-4 p.m. Griggs Midway Building Suite 330 1821 University Avenue West, St. Paul Space is limited due to the size of the room. Please reserve your space today by calling (6 1


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The Metropolitan Centerfor Independent Living (MCIL) is generously providing interpreters. , SPECIALIZEDTRANSPORTATION


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113 :A


February 10,1997

IN BRIEF. . . . to observe for seizures and The Department has made up ment's representativewill ask intervene when one occurs. the policy that "wait time" is what a person eats and how The Department's contrary not a covered service. Unbe- long it takes to prepare each lievable as it may be, the De- item. The same kind of quespament~s representatives tions are going to be asked if a Sv,&Dmment have 4dthattimc involvedin nd assistance form provides that the num- waiting far the e f k t of a bow- eating. ber of FCA hours for "Level I el program fw a person with Behsvior,,, such as hmg qudriplegi. is nr* a cavaed Therearetwomajorproblems oneself or others, is limited to service. Theexclusionof 'wait with this approach. The tbt, the actual time for interven- time" has also been applied in and obvious, one is that there tion of the estimated number meal preparation. Apparently isnobasis to say with certainty of occurrences for the behav- it is a covered personal care how long it takes to do most of ior. This approach is taken service to peel potatoes and the things that PCAs do. The despite the fm that law put them on the stove to boil, e m o n that these W s provides for a PCA to assist butitisuncovered'2vaittime~~ canbeprreiselydefmdissimwith " d i m t i o n and inter- whilethecook. While ply inconsistent with the way lived Sometimes ittakes vention behsvior, inCIud- it is dY appropriatefor a ing observation and monitor- PCA ti, do other things than longerthanothertimes. Someing." There are at least four watch a pot boil, the simple times things just do not get appeal decisions which rec- factthat the FCA must remain done. ognize that the PCA must be present to take the potatoes present to observe and moni- out of the pot, and ought to be The second problem is the tor for these behaviors, and paid for that time, seems lost wholesale invasion of privacy which allow time for that PUT- upon the Department's home in these heariugs. If dressing pose. Nevertheless, the De- care policy makers. is eonsid& the quapartment of Human Services tion be asked what the persists in operating the pro- These policies and practices person wears at night, asifit is gram without regard to what can and sbuld be challenged anybody's business what a * clearly authorizes. by appealing the denial or re- person wears at night. When. duction of PCA time. The time far toileting is in quesThe "hands-on intervention Disability Law Center pro- tion, the ~eprtment'srepreO n l y ~ ~ ~ o f m e D e p * - Fan about PCA wntative the ment ignores the fiict that the appeals-just call (6 12)332- whole process: "Are you on legislature has provided for 1441 and ask for Disability the toilet or on a commode "redirection, monitoring, and La* Center intake. Where observation that is medically chair? How long do you sit on necessary and an intetegnl part mare,h~ever.downsides the stool?" There should be ofcOm~'ning"the pa- tomeapped~oocss. Someof no need lwei of q"& sonal care services described the Department's appeals d-tioning but it goes on in the

New PCA Support Group

The Personal Care Attendant Workingwith people who have equipment or personal assisProgram of the Metropolitan severe disabilitiescan be very Cance techniques that they are Center for Independent Liv- exhausting or stressful. This unsure of. In other words, be a gd O ~ ~ m i t y fthese a can hasafety the people providing these es- valve in a difficultjob. There sential services to talk about is no charge, and no advance the stress. It'll be a way to registration -just show up! resolveanywork-relatedproblems before they get serious, For further information, call and to share ideas on how to Ken Moses,MCIL's Independeal with those problems. dent Living and PCA CoordiPCAs may also use the group nator, at 612-603-20 13. learning Univ~ityAve.W-inSt*~ul-

mg (Mca) is sponsoring a support group for PCAs and fiunily caregivers on the last Thursday of every month (the first ones are February 27, March 27, April 24, May 29, andJune26)startingat4:3Opm at MCIL's facilities in the Spruce Tree Center, 1600

Independent Living Workshop

The Independent ~iving Skills department of the Metropolitan Center for Independent Living (MCIL) is planning a oneday Independent Living woIlcshop fir Saturday, April 19. This will be an all-day event.of informal panel discussionsindhands-ondemonstratims. The morning sessiomwill cover time and budget management,PCA supervisi? shopping for dealmgwith agencies,the gov-

emment, communication, and an introduction to the ADA. The afternoon session will go into practical matters including the selection, use, and maintenance of wheelchairs, urinary appliances, and ventilators, and other topics that will be useful for people with disabilities. This workshop will be open to all people with disabdities and their families, PCAs and others working in the field, and anyone else in-

The Sister Kemy Institute Annual Art Showwill be April dudlineforinclusim in the show is March 22.

&wing, sculprure and p h tography. Entries are judged by mcmbol of the Twin Cities ncommunity.

terested in independent living skills. The cost will be $5.00, which includes lunch. Preregistration is requested. This program will bq held in MCIL's hilitiesinthe Spruce Tree Center, 1600 University Ave. St. Paul. For further information, call Ken Moses, MCIL's Indepemht Living an&PCACoordinaQr, at 6124022013.

Arf show Deadline

eachofthesixcatqrones. Sixty-seven awards were given last Year,,nhlmingS12,000to the artists in awards and sales.

Works will be judged in Ph Awarts are given for Best of For a regimion 863-4205. categ~es:mixedme&, wa- Show, Peoples' Choice, and should tercolor, oils illld kd and thinl in



v respiratorydistress be provided if the PCA is not there to Another downside is the type observewhatis happeningand of questioning that the person take needed action? How can who is appealing a decision

cess by telephone, actually asked these questions: "Just tell briefly, do you want to tell me how you do her pen care?

Do the decision-makers on these issues atthe Department really believe that a PCA will come in for ten minutes at

When the appeals referee interjected to say it was not necessary to go into that amount ofdetai1,theDepartment'srep resentative said, "It makes a littledifference.It'salotquicker to take out a wipe." And then she laughed. The woman's mother observed that this kind of questioning was kind of embarrassing. The Department's representativeresponded, "I tend to forget they're there when I'm on the phone."

ing additional PCA time, or that person's PCA or supervising nurse, will be asked to statehow much time each little tasktakes. Ifmealpreparation time is involved, the Depart-


Annual Conference wp Saturday, April 5,1997 - . St. Paul Radisson Inn

Adult Issues: Assisted Suicide Legal and Ethical Issues

Children's Issues: Adoption, Foster Care SSI, and TEFRA (612) 296-6785 1-800-945-8913 (Voice/TTD)

This kind of insensitivity is inexcusable. The PCA program has, indeed, been a success. PCA services are crucial services, but they are received at a price. The apparent pressure to cut back on authorizedPCA hours leads to: enforcement of informal policies inconsistent with the law, the need to constantly appeal proposals that reduce PCA hours, and the relentless probing, in an unseemly and inhumane manner, into the daily livesofpersonswhoneed these services.




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~&bruary10, IPM'

Access Press

Reliaion & Disabilitv

he "Dance Program

When I fmt began serving on because I was unsure of what more slowly than usual, and

lrograrn grew each year.

e different sites.

One of the greatest gifts I reI had never cared for someone When preparing to teach my ceived from my students is a with a seizure disorder, or tried classes, I found myself re-ex- more real, or more concrete,

pofiant member ofthe dance many young people became much to give and much to strengthened. I also learned group. For studentswho have of that dream. teach. how to communicate theological concepts in simple, conCrete terms. What may have taken a twenty-page paper to explain in college was just as easily explahed with a few simple concepts, some visual aids, and familiar Gospel Churches that become involvedinministry with people who are developmentally disabled can expect to tind themselves receiving much more than they give. They can expect to be .reminded of the

realized that Beaver Dam was this man's hometown. What he was really saying was that heaven would be like coming home to a place where he knew he belonged. If we will simply open our doors and hearts to them, peotheir faith communities. Jeanne Dicke is the Minnesota Outreach Worker for Bethesh LutheranHomesand Services. She can be reached at 773-7595.

BUILDING BRIDGES Helping people with cerebral palsy and other disabilities achieve independence.









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February 10,1997

Access Press

On Mental Health




Hello kicole:

Coping With Stress by CeCe Chandler Less of a Stressor!') Perhaps It's not a fantasy. It's the real thing. the most important thing I do Beingcrqbcomirieredcool! in leadimg a balanced life is getting my sleep. I have Yup, it's true. In the helter- learned, much to my dismay, skek, flurryand hustle that if I get one jot less than bustle of today's world, taking eight hours nightly, theCreaon tasks and living on adrena- ture from the Black Lagoon line is considered the norm. comes calling. Not only does Think about it from this per- my family spend the rest of spective: filofaxes, cell their day tiptoeing around the phones, and Franklin plan- house, but my work and all ners are our best friends. Be- aspects of my personal life ing busy - h t i c a l l y , over- suffer. whelmingly busy -is considered hip, as hip as those brim- Yetsleepingisn'ttheonlything ming "in" baskets we try to one can do to lead a calm, emptyduringour60-hourwork balanced life;keeping to arouweeks. tine is beneficial also. Now, you don't have to lead the life I, too, fmd it hip to be hyper. I of a robot to follow this sugpresently juggle one full-time gestion. Rather, I think you and two part-time jobs com- should try to keep the main bined with occasional aspects ofyour life in sync. helance writing; and I have For example, I rise and go to managed to complete several bed at the same time frequentjob interviews during the past ly; I take my medication when couple of weeks. Throw in I wake up and when I go to normal day-to-day activities, bed; I eat t k e healthy meals such as shopping and sleep- per day. By following this in& and any extra time goes basic formula, I've discoveredthat my body has adapted "poofl" to a rhythm which enables it to But, unlikemost people, I have function on a fairly even keel, managed for the most part to even if I get sick. Sure, keepeliminate the stress which oc- ing and following a basic curs on a day to day basis. framework for life may be a bit

name ofthe latest cheer for the Green Bay Packers. It's a motto that I live with. I organize and run as many errands together as possible. To be truthful, I don't have much of a choice because of the many jobs I have, yet managing to complete CMstmas shopping for 14 people in less than two hours is a feat unto itself. The secret to successful streamlining lies in organization. I c a w a small 3 x 5 calendar with me that has the names, numbers, andaddresses of all the people I frequently contact. I send my bills out once a week. I tape shows that I want to watch and fast forwarddrroughthecommercials. I get up thirty minutes early in themorningtofoldlaundryor clean my apartment. The list goes on and'on.

Sure, there are days when depression overwhelms me and it takes everything I have to get out ofbed. But still I force myself to move. You see, I cannot take medication for depression, and so to fight it, I use my balancing techniques as a defense. After all, I think it's much better to be up and


Another definite balancer in my life is setting asidetime for myself every day. I usually My secret? (Stay tuned for allow myself 30 minutes to do 'CeCe's Suggested Shenani- anything, anything but wpny. gans for Making Your Life Generally, I do the obvious - pick up a good book, watch a sitcom that I've recorded, or simply take a short nap. I turn off the phone and r e k to answerthe door. That time is mine a d no one is gonna take it. Just knowing that I have that time to myself -even during stressful periods -has proven more than once to be a lifesaver.

before is pretty darn good.

But, in the ad,only one thiftg matters: these foul--s enable me to lead a rich and fulfilled life. So, as my Mom might say (if she knew about my nickname): "My daughter is no longer a 'freakasaurous.' She's just eccentric."


S&Paul, MN.551

Mental Health Personal Care Service

Cece Ckanderguiltily &its that she occasionally lapres in certain aspects of balaracing her I@, but her perseverance toward following them overthepastyear haspaidofl She is now theproatdowner ojP Elizabeth, a new car, to whom Streamline! Streamline! shewouldliketociedicatethis Streamline! No, that's not the column

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February 10,1997

7:k;: *2

"ore IC Z 7 Legisl~LiveIssues





mmw '%

by Tom Brick

Initiatives that encourage positive Disability Law Center: Proposed and recycling of AAC systems. ted to state institutions. Press, we discussed a number of ways to help students behave well legislation to mandate that people disability-relatedissues presented at in school so that all students and who need a power wheelchair would PACER Center: Tokeep up with the action on disabilthe Legislative Roundtable hosted adults can feel safe. get one regardlessof where they live. Special Education - Finance: .ity issues at the State Capitol, read .- by the Minnesota State Council on A graduationrule and standardthat Work to insure that any proposed Access Press each month. Also the Disability. The Legislative Round- guarantees an array of appropriate Minnesota Governor's Council on changes do not impact negatively Senateand House each publishweek:?? table consisted of four hours of preacmmmodationsandm~cations Developmental Disabilities: Pro- on special education funding for ly updates of their activities. To get sentations and 35 pages of written that ensure equity for all learners. pose an initiative to assure that all students with disabilities. your h e copy of the Senate's Brief-, . material. I will try to cover issues direct care workers,including indi- Special Education - Statutes: ly, call 2%-0504. To order the presented without repeating infor- Minnesota Commission Sewing viduals with developmental dis- Work for protection of children House's Session Weekly, call 296mation that appeared in the January Deaf & Hard of Hearing People abilities and families, receive and voung adults with emotional 2146. (MCDHH) Legiilative Initiatives: competency-basedandvalue-based issue of Access Press. Legisldon requiring that all new- training and, therefore, quality serAlliance for the Mentally 111 of born infants be screened for hear- vices and supporth m service deliv- examining all proposals for l&- zens with Disabilities (MN CCD) ing loss. ery systems. guagechangesregardiigdiscipline meets each Friday, at Noon, during Minnesota (AMI): LegislationtoreauthoxizeMCDHH that might result in a negative im- the legislativesession. Meetings are and to expand its budget. National Federation of the Blind pact on students with disabilities. held in the StateOffice Building. For Continued funding for the MN (NFB): The NFB seeks recognition Education Vouchers: Monitor all the room number call the-Council on Employment Center for Deaf and from state government that services legislative proposals establishing Disability at 2%-6785. The M N Hard of Hearing People (MEC). to blind persons are unlikeany others any voucher system to determine CCD is a broad-based coalition of g Crisis Housing Fund Fundingforeducationalassessment that are provided by governmental impactleffect on services to chil- organizationsofpersonswith disabil,000 to $200,000 forthe resources for deaf, hard of hearing agencies. The NFB requests that a dren and youth with disabilities. ities, providers, and advocates dediand deafblind students. Department for the Blind be created Support strong fiscal commitment cated to improving the lives of perSupport the Supreme Court.Task Quality assurance legislation for and that asmany servicesaspractica- from the state of Minnesota to the sons with disabilities. We address ble be placed in this department. mmendations on civil all interpreters in the state. education of students in public ele- public policy issues that affect peomentary and secondary schools. ple with disabilitiesby collaborating , Minnesota A I ~Project's S (MAP) STARProgmm (A System of Teehwith others, advocating, educating, nology to Achieve Results): The AdvocatingCbanpTogether-The influencing change, and creating , +Learning Disabilities of Minneso- Legislative Action Agenda: . fa (LDIVL) will promotehork for: Increasing access to health care STAR Program is recommending Remembering With Dignity awareness for understanding. and support services. that the legislature establish an Project will again introduce a reso. Introduction of legislation to expand the scope and duration of the Promoting effective HIV educa- AAC (augmentative and alternative lution making a public apology to Torn Brick is on thestaflofMNState communication) Service, which is all persons with developmental Council on Disability. Options Plus Pilot Program to re- tion and prevention. flect the original intent of the legis- Ensuring fair treatment of peo- either state run or connected, to pro- disabilities and mental illness who ple affected by HIV. vide for the purchase, distribution, have been involuntarily commitlation

.In the January edition of Access





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February 1997  

Feb. 1997 issue