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February 1997

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Page 1: February 1997

Nicole on Assisted Suicide - p.5

"There are no fearless people, only fearless moments. "

- Peter Hoeg, Borderliners

Access Press Volume 8, Number 2 SOURCES

DOESGOVERNORCARE.? His Words Don't Say So by Charlie Smith, Editor

Last month I listened to Gov- (source: MN Disability Law ernor Carlson give his State Center). The reality is, these of the State address. The fol- cuts in income and loss of lowing letter was faxed to the medical coverage could re- Governor; his response is also sult in massive homelessness

for a large number of families of children with disabilities.

As you will see, the Governor only addresses half of the is- What do you propose to do sues I raised, and even then he for these children and their

cations. By not answering the Charlie Smith tough question, I can only Editor/Publisher conclude he doesn't care. It appears from his letter that GOVERNOR'S RESPONSE putting people to work is "the solution." Sincechildren with Thank you for your letter ex- disabilities and their families pressing the concern about are faced with unique chal- changes in the federal Sup-

changes will have on children with serious emotional dis-

On February 4"', a combined turbance and their families.

nlawf ul Practices House and Senate hearing of the Health and Family Securi- The loss of safety net pro- ty Committee was heldtotake grams for any child is a diffi-

educe PCA Hours testimony on how the federal cult situation. Although the cuts to Supplemental Securi- state cannot make up all lost ty Income (SSI) will impact federal dollars, we are work-

by Luther Granquist, Disability Law Center The StateofMinnesota's Per- sonal 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 ex- tent, in spite of how it is ad- ministered by the Department ofHurnan Services (DHS). In some ways the program's ad- ministration is unlawful, in other ways simply inhumane.

It is a fact, as the DHS health care nurse consultants and their supervisors frequently state, that the legislature has changed the Personal Care Attendant statute. General supervision for safekeeping, which years ago was a '-cov-

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

One example is seizures. The Department's assessment form contains the average number of seizures and the amount of time it takes to in- tervene for each seizure. The DHS Bulletin gives this es-

ample: "Based on seizure his- tory, the paid caregiver will manage seizures 20 minutes two days per week. The total time required is 40 minutes per week." Obviously, since seizures cannot be scheduled 40 minutes a week, whict. wouldbe averaged to roughly 6 minutes a day, this practice does not insure that a PCA will be present when aseizure occurs. The Department over- looks the fact that the law clearly provides for "interven- tion for seizure disorders, in- cluding monitoring and ob- servation ...." A person can- not monitor and observe for seizures ifaperson isn't there; within the amount of time a recipient of care is eligible to receive, the PCA can be used

PCA - cont. or1 p. 3

families and legal immigrants. At least the legislature is lis- tening and trying to come up with solutions. Let's hope the Governor is, too!

Dear Governor Carlson:

Today, in your State of the State address, you emphasized "Children first," several times throughout your message. You say you have a real com- mitment to the future of the children of Minnesota.

In July of 1997,3200 Minne- sotachildren who receive SSI benefits will lose those bene- fits to federal cuts.

Asaresult. thesechildren will lose medical coverage, and in many cases, this will mean a 40% drop in family income

ing hard to find solutions to the challenge this presents for our children. The Depart- ment ofHuman Services staff are studying the new federal legislation to determine what it will mean for Minnesota's children. I have the following information to offer at this time:

* Based on data from the So- cial Security Administration and the Congressional Bud- get Office, the numberofchil- dren losing SSI in MN could vary from 1,000 to 3,200, depending on regulations written by the Social Security Administration. We are hope- ful that they will use the broad leeway Congress has given them in their implementation ofthe law and reduce the num- ber of affected children.

* Under current state law, an estimated 80 percent of the children who lose SSI will still qualify for Medical As- 4 sistance through a low-income basis of eligibility or because their families are eligible for 1 Aid to Families with Depen- dent Children. Oftheremain- d.r: ing 300 to 700 children who

I

lose their Medical Assistance coverage, manywe expected

r Q=mm Children with Special Health Needs (MCSHN) programs.

erage and not qualify for oth- er public health care pro- grams.

Minnesota's responseto these and other changes is a fair plan that stresses the value of work. The linchpin is the highly respected and nation- ally acclaimed Minnesota Family Investment Plan. While families will have to work, we will provide assist- ance and support, including significant investments in child care. We are coordinat- ing this effort with the Minne- sota Department of Children, Families and Learning.

I appreciate your interest and involvement in crafting a meaningful state response to the welfare reform plan as it affects children with serious emotional disturbance. De- veloping Minnesota's ap- proach to welfare reform is a shared responsibility be- tween citizens. local and state government, business, and representatives of the local systems of care. I look for- ward to a constructive leg- islative session. Together we can find a solution that best serves all Minnesota chil- dren.

Page 2: February 1997

.

2 February 10,1997 Access Press

Since Christopher Reeve.. . I Interpreter Services by Charlie Smith

- 1 Thc Miesota State Legisla- attend a committee meeting, legislature Tuesdays and ture has contracted with the or observe a session of the Thursdays from Sam to noon

Duriag the COntrovetSy Over - ~ ) met with a Ever since that Interpreter Referral Center House of Representatives or through February 27. That awarding the 1996 National group representing a coalition Mr. Phillips and Ms; Burdick (IRC) of the Minnesota Foun- the Senate, they simply have interpreter is available to in- - :OurageAwdtO-*er of orgmintions- havetalrenthercconcernsvay

&jon for Hering to callthe IRC leghlativenum- t e r n famy n& that have rCeeve, d i ~ b i l i t ~ a- goup a numb of soiowl~. Thvhve=ged Spoosh to pmvi& sign In- & Q612-282-223 1 or d*- besnpevrrWlyrequ&&-

of =pding ma@ fw Ilonba page and o d interpreting ly to h e mC sf 612-224-6548 ing those times and to be ing out of touch with the dis- Center's position in thedis- of Board membem and pro- services for the *997 lesiSlala DS m. me lRC urn*dl7, for lw min* ability community. David ability community. Same of gram staff b meet with the tive Phillips, Executive Director of these concerns were: Courage group fimn the coalition.

Monday through Friday fimn quests. Piease continue to call

P 7-3Oam to 4:30pm. the IRC for all legislative in- Coltrage Center, made a corn- Center's isolation b t h e dis- Any time any Deaf, Deafblind terpreting requests and they mibnentm the disability com- ability community; the Cen- There have been six a seven orhdofh-g pnon wants A language intwer is will psgs the interpreter for munity to me& ~ i r n the ter's a p ~ a h meetings since the Reeve to mt* fi their legislator, regulply scheduled at the the last mj,,"te nce,s.

sts to hear their concerns. and the use of the medical event; both sides are finding model vs. the independent common ground to work on. lk - 311

f i e day a* the Reeve event model in A Courage center is committed in October, Mr. Phillips and number of athet issues were to change and is welcoming

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

I Sponsored by Disability Services and the Disabled Student Cultural Center

at the University of Minnesota. For accommodations, please call 626-1333

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Co-founderffubliiher (1998-1995) ,.............. , ...... ... ........................................ Wm. A. Smith, Jr. Editru/PublkherlCgFo~~nder .............. " ................... , ....................... ... Charles RSmith

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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, institutional and civic leaders. Subscriptions are available for $ 1 Styr.

Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. I I 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. I I Advertising and editorial deadlines are the 30th of the month preceding publication; special scheduling available for camera-ready art. I I ~ c c e s s Rcsr is available on tape. Call MN State *ices for the Blind, 642-0500 or 800-652-9000. I I Inquiries should be directed to: ACCESS PRESS 1821 University Ave. W. Suite 185N St. Paul, Minnesota 55104 (612) 644-2133 Fax (612) 644-2136 I

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Page 3: February 1997

February 10,1997 3

to observe for seizures and The Department has made up ment's representative will ask

IN BRIEF. . . . intervene when one occurs. the policy that "wait time" is what a person eats and how New PCA Support Group The Department's contrary not a covered service. Unbe- long it takes to prepare each The Personal Care Attendant Working with people who have equipment or personal assis-

lievable as it may be, the De- item. The same kind of ques- Program of the Metropolitan severe disabilities can be very Cance techniques that they are

pament~s representatives tions are going to be asked if a Center for Independent Liv- exhausting or stressful. This unsure of. In other words,

S v , & D m m e n t have 4dthattimc involved in nd assistance mg (Mca) is sponsoring a be a gd O ~ ~ m i t y f a these can hasafety form provides that the num- waiting far the e f k t of a bow- eating. support group for PCAs and the people providing these es- valve in a difficult job. There

ber of FCA hours for "Level I el program fw a person with fiunily caregivers on the last sential services to talk about is no charge, and no advance

Behsvior,,, such as hmg qudriplegi. is nr* a cavaed There aretwomajor problems Thursday of every month (the the stress. It'll be a way to registration -just show up!

oneself or others, is limited to service. Theexclusionof 'wait with this approach. The tbt, first ones are February 27, resolveanywork-relatedprob-

the actual time for interven- time" has also been applied in and obvious, one is that there March 27, April 24, May 29, lems before they get serious, For further information, call

tion of the estimated number meal preparation. Apparently isno basis to say with certainty and June26)startingat4:3Opm and to share ideas on how to Ken Moses, MCIL's Indepen-

of occurrences for the behav- it is a covered personal care how long it takes to do most of at MCIL's facilities in the deal with those problems. dent Living and PCA Coordi-

ior. This approach is taken service to peel potatoes and the things that PCAs do. The Spruce Tree Center, 1600 PCAs may also use the group nator, at 61 2-603-20 13.

despite the fm that law put them on the stove to boil, e m o n that these W s Univ~ityAve.W-inSt*~ul- learning provides for a PCA to assist butitisuncovered'2vaittime~~ canbeprreiselydefmdissim- Independent Living Workshop with "dimtion and inter- whilethe- cook. While ply inconsistent with the way vention behsvior, inCIud- it is dY appropriate for a lived Sometimes ittakes The Independent ~iving Skills emment, communication, and terested in independent living

ing observation and monitor- PCA ti, do other things than longerthanothertimes. Some- department of the Metropoli- an introduction to the ADA. skills. The cost will be $5.00,

ing." There are at least four watch a pot boil, the simple times things just do not get tan Center for Independent The afternoon session will go which includes lunch. Pre-

appeal decisions which rec- fact that the FCA must remain done. Living (MCIL) is planning a into practical matters includ- registration is requested.

ognize that the PCA must be present to take the potatoes oneday Independent Living ing the selection, use, and

present to observe and moni- out of the pot, and ought to be The second problem is the woIlcshop fir Saturday, April maintenance of wheelchairs, This program will bq held in

tor for these behaviors, and paid for that time, seems lost wholesale invasion of privacy 19. This will be an all-day urinary appliances, and venti- MCIL's hilitiesinthe Spruce

which allow time for that PUT- upon the Department's home in these heariugs. If dressing event.of informal panel dis- lators, and other topics that Tree Center, 1600 University

pose. Nevertheless, the De- care policy makers. is eonsid& the qua- cussionsindhands-ondemon- will be useful for people with Ave. W. in St. Paul. For fur-

partment of Human Services tion be asked what the stratims. The morning ses- disabilities. This workshop ther information, call Ken

persists in operating the pro- These policies and practices person wears at night, asifit is siomwill cover time and bud- will be open to all people with Moses, MCIL's Indepemht

gram without regard to what can and sbuld be challenged anybody's business what a get management, PCA super- disabdities and their families, Living an&PCACoordinaQr,

*e.law clearly authorizes. by appealing the denial or re- person wears at night. When. visi? shopping for PCAs and others working in at 6124022013.

duction of PCA time. The time far toileting is in ques- dealmg with agencies, the gov- the field, and anyone else in-

The "hands-on intervention Disability Law Center pro- tion, the ~eprtment's repre- Arf s how Dead li ne O n l y ~ ~ ~ o f m e D e p * - Fan about PCA wntative the The Sister Kemy Institute &wing, sculprure and p h - eachofthesixcatqrones. Six- ment ignores the fiict that the appeals - just call (6 12) 332- whole process: "Are you on Ann ual Art Show will be April tography. Entries are judged ty-seven awards were given legislature has provided for 1441 and ask for Disability the toilet or on a commode dudlineforinclu- by mcmbol of the last Year, ,nhlmingS12,000 to "redirection, monitoring, and La* Center intake. observation that is medically

Where sim in the show is March 22. Twin Cities n community. the artists in awards and sales. chair? How long do you sit on

IT- - MINNESOTA STATE COUNCIL

ON DISABILITY

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)

necessary and an intetegnl part mare,h~ever.downsides the stool?" There should be Works will be judged in Ph Awarts are given for Best of For a regimion ofcOm~'ning" the pa- tomeapped~oocss. Someof no need lwei of q"& categ~es: mixed me&, wa- Show, Peoples' Choice, and should 863-4205. sonal care services described the Department's appeals d- tioning but it goes on in the tercolor, oils illld kd and thinl in

respiratory distress be provid- cess by telephone, actually ed if the PCA is not there to Another downside is the type asked these questions: "Just observewhat is happening and of questioning that the person tell briefly, do you want to tell take needed action? How can who is appealing a decision me how you do her pen care?

Do the decision-makers on ing additional PCA time, or When the appeals referee in- these issues atthe Department that person's PCA or super- terjected to say it was not nec- really believe that a PCA will vising nurse, will be asked to essary to go into that amount come in for ten minutes at state how much time each little ofdetai1,theDepartment'srep

tasktakes. Ifmealpreparation resentative said, "It makes a time is involved, the Depart- littledifference. It'salotquick-

er to take out a wipe." And then she laughed. The wom- an's mother observed that this kind of questioning was kind of embarrassing. The Depart- ment's representative respond- ed, "I tend to forget they're there when I'm on the phone."

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 authorized PCA 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 lives ofpersons whoneed these services. .

I I .> 1- :. v

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Page 4: February 1997

m I

k- - 4 ~&bruary 10, 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. One of the greatest gifts I re- I 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,

e different sites. pofiant member ofthe dance many young people became much to give and much to strengthened. I also learned realized that Beaver Dam was group. For students who have of that dream. teach. how to communicate theolog- this man's hometown. What

ical concepts in simple, con- he was really saying was that Crete terms. What may have heaven would be like coming taken a twenty-page paper to home to a place where he knew explain in college was just as he belonged. easily explahed with a few simple concepts, some visual If we will simply open our aids, and familiar Gospel doors and hearts to them, peo-

Churches that become in- their faith communities. volvedinministry with people who are developmentally dis- Jeanne Dicke is the Minneso- abled can expect to tind them- ta Outreach Worker for selves receiving much more Bethesh Lutheran Homesand than they give. They can ex- Services. She can be reached pect to be .reminded of the at 773-7595.

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

UNITED CEREBRAL PALSY (612) 646-7588

~ - ~ ~ m ~ ~ m ~---q

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I I city I I I I zip Telephone 1 I n Limited income subscription: $5 1 (0 I have an idea for editorial coverage. Please call me. ( 10 I've enclosed my check for $1 5. Start my subscription.1 I 0 Send your advertising rates. (612) 644-2133 1

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Page 5: February 1997

- - - - --a Access Press February 10,1997 5

On Mental Health

Coping With Stress by CeCe Chandler

It's not a fantasy. Less of a Stressor!') Perhaps name ofthe latest cheer for the It's the real thing. the most important thing I do Green Bay Packers. It's a Beingcrqbcomirieredcool! in leadimg a balanced life is motto that I live with. I orga-

getting my sleep. I have nize and run as many errands Yup, it's true. In the helter- learned, much to my dismay, together as possible. To be skek, flurry- and hustle that if I get one jot less than truthful, I don't have much of bustle of today's world, taking eight hours nightly, theCrea- a choice because of the many on tasks and living on adrena- ture from the Black Lagoon jobs I have, yet managing to line is considered the norm. comes calling. Not only does complete CMstmas shopping Think about it from this per- my family spend the rest of for 14 people in less than two spective: filofaxes, cell their day tiptoeing around the hours is a feat unto itself. phones, and Franklin plan- house, but my work and all ners are our best friends. Be- aspects of my personal life The secret to successful ing busy - ht ica l ly , over- suffer. streamlining lies in organiza- whelmingly busy - is consid- tion. I c a w a small 3 x 5 ered hip, as hip as those brim- Yetsleepingisn'ttheonlything calendar with me that has the ming "in" baskets we try to one can do to lead a calm, names, numbers, andaddress- empty duringour60-hourwork balanced life; keeping to arou- es of all the people I frequently weeks. tine is beneficial also. Now, contact. I send my bills out

you don't have to lead the life once a week. I tape shows that I, too, fmd it hip to be hyper. I of a robot to follow this sug- I want to watch and fast for- presently juggle one full-time gestion. Rather, I think you warddrroughthecommercials. and two part-time jobs com- should try to keep the main I get up thirty minutes early in bined with occasional aspects ofyour life in sync. themorningtofoldlaundryor helance writing; and I have For example, I rise and go to clean my apartment. The list managed to complete several bed at the same time frequent- goes on and'on. job interviews during the past ly; I take my medication when couple of weeks. Throw in I wake up and when I go to Sure, there are days when de- normal day-to-day activities, bed; I eat t k e healthy meals pression overwhelms me and such as shopping and sleep- per day. By following this it takes everything I have to in& and any extra time goes basic formula, I've discov- get out ofbed. But still I force "poofl" ered that my body has adapted myself to move. You see, I

to a rhythm which enables it to cannot take medication for But, unlikemost people, I have function on a fairly even keel, depression, and so to fight it, I managed for the most part to even if I get sick. Sure, keep- use my balancing techniques eliminate the stress which oc- ing and following a basic as a defense. After all, I think curs on a day to day basis. framework for life may be a bit it's much better to be up and

. .

Another definite balancer in But, in the ad, only one thiftg before is pretty darn good. my life is setting aside time for matters: these foul- s-

myself every day. I usually enable me to lead a rich and My secret? (Stay tuned for allow myself 30 minutes to do fulfilled life. So, as my Mom 'CeCe's Suggested Shenani- anything, anything but wpny. might say (if she knew about gans for Making Your Life Generally, I do the obvious my nickname): "My daugh-

- pick up a good book, ter is no longer a 'freak- watch a sitcom that I've re- asaurous.' She's just eccen- corded, or simply take a short tric." . nap. I turn off the phone and r e k to answer the door. That Cece Ckander guiltily &its time is mine a d no one is that she occasionally lapres gonna take it. Just knowing in certain aspects of balarac- that I have that time to myself ing her I@, but her persever- - even during stressful peri- ance toward following them ods - has proven more than overthepastyear haspaidofl once to be a lifesaver. She is now theproatdowner oj

Elizabeth, a new car, to whom Streamline! Streamline! shewouldliketociedicatethis Streamline! No, that's not the column

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Page 6: February 1997

February 10,1997 7: k;: *2 1- t'' >L m m w "ore I C Z 7 Legisl~Live Issues -& '% by Tom Brick

.In the January edition of Access Press, we discussed a number of disability-related issues presented at the Legislative Roundtable hosted

.- by the Minnesota State Council on Disability. The Legislative Round-

: ?? - table consisted of four hours of pre- ' sentations and 35 pages of written -, . material. I will try to cover issues

presented without repeating infor- mation that appeared in the January issue of Access Press.

Alliance for the Mentally 111 of . )C Minnesota (AMI):

g Crisis Housing Fund ,000 to $200,000 forthe

+ Support the Supreme Court. Task mmendations on civil

,

, +Learning Disabilities of Minneso- . fa (LDIVL) will promotehork for: . Introduction of legislation to ex-

pand the scope and duration of the Options Plus Pilot Program to re- flect the original intent of the legis- lation

Initiatives that encourage positive ways to help students behave well in school so that all students and adults can feel safe. A graduation rule and standard that guarantees an array of appropriate acmmmodationsandm~cations that ensure equity for all learners.

Minnesota Commission Sewing Deaf & Hard of Hearing People (MCDHH) Legiilative Initiatives:

Legisldon requiring that all new- born infants be screened for hear- ing loss. LegislationtoreauthoxizeMCDHH and to expand its budget. Continued funding for the MN Employment Center for Deaf and Hard of Hearing People (MEC). Funding for educational assessment resources for deaf, hard of hearing and deafblind students. Quality assurance legislation for all interpreters in the state.

Minnesota A I ~ S Project's (MAP) Legislative Action Agenda:

Increasing access to health care and support services. Promoting effective HIV educa- tion and prevention. Ensuring fair treatment of peo- ple affected by HIV.

Disability Law Center: Proposed legislation to mandate that people who need a power wheelchair would get one regardless of where they live.

Minnesota Governor's Council on Developmental Disabilities: Pro- pose an initiative to assure that all direct care workers, including indi- viduals with developmental dis- abilities and families, receive competency-basedandvalue-based training and, therefore, quality ser- vices and support h m service deliv- ery systems.

National Federation of the Blind (NFB): The NFB seeks recognition from state government that services to blind persons are unlike any others that are provided by governmental agencies. The NFB requests that a Department for the Blind be created and that asmany services aspractica- ble be placed in this department.

STARProgmm (A System of Teeh- nology to Achieve Results): The STAR Program is recommending that the legislature establish an AAC (augmentative and alternative communication) Service, which is either state run or connected, to pro- vide for the purchase, distribution,

and recycling of AAC systems. ted to state institutions.

PACER Center: Special Education - Finance: Work to insure that any proposed changes do not impact negatively on special education funding for students with disabilities. Special Education - Statutes: Work for protection of children

To keep up with the action on disabil- .ity issues at the State Capitol, read Access Press each month. Also the Senate and House each publish week- ly updates of their activities. To get your h e copy of the Senate's Brief- ly, call 2%-0504. To order the House's Session Weekly, call 296-

and voung adults with emotional 2146.

examining all proposals for l&- zens with Disabilities (MN CCD) guage changes regardiig discipline meets each Friday, at Noon, during that might result in a negative im- the legislative session. Meetings are pact on students with disabilities. held in the State Office Building. For Education Vouchers: Monitor all the room number call the-Council on legislative proposals establishing Disability at 2%-6785. The MN any voucher system to determine CCD is a broad-based coalition of impactleffect on services to chil- organizations ofpersons with disabil- dren and youth with disabilities. ities, providers, and advocates dedi- Support strong fiscal commitment cated to improving the lives of per- from the state of Minnesota to the sons with disabilities. We address education of students in public ele- public policy issues that affect peo- mentary and secondary schools. ple with disabilities by collaborating

with others, advocating, educating, AdvocatingCbanpTogether-The influencing change, and creating Remembering With Dignity awareness for understanding. Project will again introduce a reso- lution making a public apology to Torn Brick is on thestaflofMNState all persons with developmental Council on Disability. disabilities and mental illness who have been involuntarily commit-

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