January 1996 Edition - Access Press by Access Press

Directory

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Guest Commentary by Billy Golfus Page 5

"Were it left to me to decide whether we should have a government without newspapers, or newspapers without a government, iskould not hesitate. moment to prefer the latter ." - Thomas Jefferson

Access Press DHS Taken To Task PCATask Force - A DHS Set-Up? 'k'a 1 1

The bad news is that Bill Smith, Jr.- businessman, publisher, collector, jazz fan and legitimate 20th century renaissanceman-is nolonger here.

I!eeting of thk6f!b-hg CommitteeoftheDepartment of Human Sem ices (DHS) Home Care Task Force, one

~ u r i n ~ l a s t ~ e session a r ' s the Legislature changed the PCA program effectiveJuly 1,1996 to cut off persons who cannot

The Department also did not give the Steeriq&et.ft@iz - -. a written state+enf regadmg the actual expenditures for

todothedevil'sownwork-to

quently provided to persons who cannot direct thkir own care, and to reduce the maximumnumberofhoursof PCA %ry&which couldbe authorized formost recipients. The Task Force was established to come up with proposals which would reduce the growth projected by the Department to no more than five percent over projected expenditures for 1995.

Department did not explain why actual expenses for tjx program apparently went' down but the estimated number of participants went up. Despite repeated requests for solid information about PCA costs and the number of persons actually receiving PCA service, Marge Brchan could only stateto the SteeringCommittee that the information provided to the Task Force and to the Legislature was "a multi-disciplinary, continuously refined data analysis effort" which was based upon "professional judgment". Such gobbledygook was not what the Task Force members were seeking. Rather, they wanted, but did not get, clear answersto specificquestions. For example, were recipients of waivered services excluded in the 1993 reports, and included in 1995? Or has there been some other change in the method of counting total PCA participants?

find another way to slash the PCA program. To some extsnt, the Task Force-&&jW &at., The Task Fom* .lapy 5 S~4-i pr&sa~~ for an alternatid menu of PCA services, but in circumstances in which the total amount ofservice hoursavailable would be reduced. This barebones proposal is not likely to be implementedthis coming Summer, for there are details to be worked out which could not be done in the Task Force committee process.

by Michael Sheehan Good news and bad news.

- .

complete by Bridget's birth in 1959.

With the need for Charlie to redirect his energiesand learn new skills, Bill, Renee, Bill 111, Charlie and Bridget headed west, to the hills of Prospect Park. There, in what might be described as a turnof-the-century New Orleans Victorian home, the family met their new life on their own terms.

In 1960, their hospitable natures lured Bill and Renee into the hospitality industry, with their acquisition of the elegant old Afton House in the scenicSt. Croix Valley. After The good news is that he was. taking up residence in the town, they became ex-officio Bill, co-founder and publish- host and hostess for the boater of Access Press, passed ing community and country Bill brought his considerable away last week of a sudden squireswho inhabitedthe val- managerial and people skills cerebral aneurysm. ley, interrupting the rhythms to the banking industry, soon of river living with the occa- becoming vice-presidentof St. Bom in Minneapolis in 1927, sional sound ofthe slidetrom- Paul's Hillcrest State Bank. he attended Marshall High bone as they provided a new He stayed until the bank was School and graduated from home base for one of their acquired by amulti-bankholdthe University of Minnesota mutual passions, the New ing company. With the with a major in mathematics Orleans Jazz Band. "hometown bank" human flaand a minor in geology. He vor diminished in favor of began his career... In 1948,he In 1967, however, life was to thin budgets and fat bottom married his high school sweet- take the Smith family in a lines, Bill threw caution- some heart, Renee, and in 1949they different direction. One sum- said sanity - to the winds and had their first son, W. A. mer's day while visiting his opened his own financial conSmith, Ill. Charlie arrived in grandparents, Charlie broke sulting business and Smith 1953and the family was made his neck. W m Smith - cont. on p. 6

The Task Force also approved, over the objection of some members of the Steering Committee, a proposal for up to a seven percent across the board cut in PCA hours if needed to make the required fiscal target for a cut in the PCA program expansion. This recommendation was initially proposed by the Task Force's Fiscal Subcommittee and approved by a majority of the Steering Committee as a flat seven percent cut in the PCA program, if the altemative program was not up and running by July 1, 1995. At the last meeting of the Steering Committee, the proposal was changed to "up to" seven percent and to "last resort" - if other alternatives to reduce the PCA program were not effective in meeting the "fiscal target", then the Task Force was supposed to meet.

The Department of Human Services actually made the work of the Task Force more difficult than it needed to be. For one thing nobody from the Department could give a straight answer to the question of what the fiscal target was for this five percent reduction. At an early meeting of the Task Force, George Hoffinan, the Department person who makes these Medical Assistance projections, said he did not know how this target was to be calculated. Marge Brchan, the Director of the DHS Home and Community Services Division, could not articulate at any of the meetings what the actual fiscal target was. The minutes of an early meeting ofthe Task Force SteeringCommittee said that savings of $19 million or $1 3 million have to be found. It was not until after the meeting of the Steering Committee that the Department stated in writing that the target was then figured to be $1 I million.

The Steering Committee, at its last meeting, did vote to recommend that the legislature repeal the changes that are slated for July I, 1996. In the text of the Task Force Report, however, this recommendation is stated only in two sentences in the introduction to the numbered, and therefore high lighted, recommendationsoftheSteering Committee. The Report does not point out that these

Task - cont. on p. 7

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Proposed Legislation For IN BRIEF. . . . (PCA) Services

The Tel-Law Legal Information tapes, which have been providing Twin Cities residents with information about common legal problems and concerns for more than a de-

by Anne L. Henry

licservice program oftheMin- Callers from outside of the nesota State Bar Association. Twin Cities calling zone may contact Tel-Law using the 1More than 70 tapes are avail- 800-558-7614. This service able. Each tape is 3 to 5 min- will last through May 1996. Utes long and providesan over- Twin Cities callers should con332-2 1 14.

the PCAprogram which hada ioral issues. Interventions for and non-elderly adults. Ms. Henry has outlined some reinstated. correctivememlres. Consum-

b v i o r Cat-

want to support and encourage each other. Call 646-5615 for rent PCA law should be con- functioning," and the substi- reinstated. sidered for change during the tute language of repetitive 1996 Session: maintenance range of motion 12.Foster Care,

(compulsions) daily. In a met- ymous (OCA) is a 12-step night meetings (also see p10).

Wheelchair Basketball

And AdultS, sible party" must be reinstated in proposed legislation.. in order to allow continuation PCA services for those chil- 6. Foster Care Provided dren and adults who cannot J3xhYk direct their own care. All language regarding foster 2. Ei~hteen-Year Old Re- care and the provision of PCA

will be included if anyone can find an example ofan existing foster care arrangement using fore 1992.

their own care should be

. It is beingaired

station manager or program-

enn. Cty. Volunteer Program Begins or certified home health train- lation. ing course or passed a compa-

ing programs for health-relat- plier from 2 to 1.75 and 3 to makes families who pay a pared careers. I recommend that 2.625 times the average num- ent fee ineligibleforparticipa-

ipating in a school-based job training program which includes training as a nursing assistant or a certified home health aid or equivalent training.

hours which adversely impacts those in the higher case mix level (persons who need more assistance due to more complex disabilities) involves using the statewide-weighted

oviding "Aid with Dignity" teers assist seniors with com- County, job and educational county residents in need. pletion of medical eligibility references, mileage and parkforms, meet clients and direct ing reimbursement.

There is rider language included in the 1995Omnibus Health andHuman Servicesbill which requires that current PCA recipients eligible forthe CADI, CAC, MRiRC, TBI or Elderly

At Hwy. 280 & University Avenue

SUPPLY

(612) 644-9770

Repeal of both of these hour services are available. Bethere is some protection for

the statute to continue PCA Language adding the rehabilitation provisions contained in the home health agency rule will be added to the proposal.

ed In Prooosed L a n e u s guage. Given the uncertainty of federal changes, it is unclear whether waivers will be 10. Seizure Activitv Assrequired in the future and this 5. ,4llowable PCA Activiambiguity should be taken out ofthe statuteuntil anew direc& Language requiring seizure tion has been determined. PCAs must be allowed to "as- activity considerations in the' sist, monitor or prompt" recip- assessment tool will be includ- PCA - cont. on D. 10

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4 January 10,1986 -

Access Press Religion & Disability

~ e 1 1 P:! 8 tole:

by LeAnne Dahl Are people with disabilities being welcomed and accepted f Iin their places ofworship? Are they participating in every aspect oftheir church life?These questions are meant to probe beyond the accessibility issues. '"7. It doesn't matter what faith we're speaking about. What $":? matters is that we all can help to create an atmosphere where .:27.1-e,3$3A@'., I :, non-disabManddisabledpeo: ple choose to learn about one another in a non-threatening @ , , , Way. ley value mnepass~4 With that as an introduction, K relationshipmsre ,_:_ --, r you are invited to examine someofthese perplexingproblems afmr day at a eonferyurubrwrwrwy ence, appropriately titled ; .. uBEYONDtheRAMP."The ' date and place is set for Toes"'.

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LANGUAGE? How do words reflect attitudes that are either encouraging or discouragingto people with disabilities? WHAT ISSUES DO FAMILlES OF PEOPLE WITH DISABILITIES FACE and HOW HAVE SPlRlTUAL COMMUNITIES RESPONDED, BOTH POSITlVELY AND N'EGATIVELY? WHAT ARE 'INVISIBLE DISABILITIES?' What effect do they have on members of spiritual communities?

way to begin dealing with the issues. One of the highlights of the conferencewill be the keynote speaker, Norman Kunc. Mr. Kunc isaCanadian familytherapist and an educational consultant who happens to have cerebral palsy. Norman attended a segregated school till he was twelve. At thirteen, he was integrated into a regular school. He completed an honors degree in Humanities at York University and received the Murray G. Ross Award for academic excellence and outstanding contribution to the University. He also compieted a Master of Science degree academic Family Thmpy at the University* Guelph. Norman, and his wife, Emma, Van Der Klifi live in British Columbiawiththeirthreechildren.

WHAT THEOLOGICAL OR FAITH STRUGGLES ' I @ day,April23,atthcRadisson DO PEOPLE WITH DISlEJ 4S rrvl Ka~e"ss9: South in Blaomington. ABILITIES FACE FROM acy,"&~8ny of those ; THE PERSPECTIVES OF things the The confmnce was planned NATIVE AMERICAN, ice associate with; by people with disabilitiesand CHRISTIANITY, JUDAh disability. But inr their families, rehabilitation lSM,ISLAM&OTHERRE- Conference brochures will be ling into those dammailed in February to all area ,-,:--_ . professionals, clergy leaders LIGIONS? ; ? and lay leaders from ma"y hith communities. To receive cr;ilunas anvply-p$ faiths. The main objectives of WHAT ARE THE EF- an additional brochure, please and disability'if x : > ~ +this gathering are to look at FECTS OF AGING ON call Ann Roscoe at 520-0466 -atritudimd, theological and PERSONS WITH LIFE- or Mary Jane Steinhagen at mrsonal beliefs about ~ e o o l e LONG DISABILITIES 2 15-22 16. The conference ~

place of worship. While the planners recognize the fact that not all people with disabilities may have the same experiences in their faith community, -... ,;.... ~ .... , .... ..;. ..... ....: . ;,>. . . .; . they believe there are enough >: ,f&&,&';.* $~:@$@a@:i-:j?> .,..* ..*: .; . . . . . who may be disillusioned. B;:<,?, ... ... . . . :;. -3:;:; ;:.i; .;.+;<,: .,.< .; . ..;. . . .. . . . . . ...* . . ,:.4.:i& . '"I::,-?;<*,,,:. . .: . ,,!,: -<- By its title, BEYOND the -........ .; .. :.... . .. . .. a . & ... ,::*.>".' . . ":-,x?>;:. ''4: . .,....,..... , . .. :... ... . 5 .. : . k g RAMP, you can see that the .,. . . . main issues are not just archi.:.. .: tectural. It is hoped that many of the clergy,and lay people . . . :..::. :.. :.;. . . . . . .>... .... ..: , . . ;;.,:,::c:..:;i;:k:.::+ g;;; .: ; :~ attending will find this confer.i:41:..'. ;. $3.::: ., . ence helpfbl in learning more <;*:."*$, > -& :5; . ,:d%p?;.::;;; :,:a::;,:.. .*<. :..+'.... ' about: ... . :.

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These are, in essence, some of the questions that clergy and congregations are faced with whenever someone witb a disability enters their doors. It's a matter of growing comfortable with that person and his/ herfeelingat ease in thechurch.

RIVERSIDE BANKERS

HOWDOTHESEAFFECT fee is $55. Registration is re FAITH COMMUNITIES? quested by April 2, 1996.

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There will be workshops to herp open communications between religious leaders, lay people and individuals with disabilities. Perhaps they will WHAT IS INCLUSIVE pave the road to an effective RF------.

Sign language interpreters are availableuponrequest. Please call 520-0466 before April 5th to facilitate interpreter scheduling. The conference planners believe that this meeting will stimulate clergy and lay people to initiate discussionswith in their faith communities that will bring about changes which will allow individualswithdisabilities to experience the true meaning of fellowship.

- Access Press Life Goes On

Jsnaary 10,1996

I Guest Commentary

Wishing -And Working! - ~ h Republican , Budget For Independence by Billy GO~~US

by LeAnne Dahl

For the past year, this column has dealt with a lot ofthenegatives that have been going or; in Congress and o w State Legislature. Of course we've had to keep our eyes and ears open while we voiced our objections loud and clear. Yet, I gottothinkingaboutthe fact that we should stop and thank the "HEROES" of our day. If you ever watch CBS MORNING, you know that people write in to nominate their favorite hero of the day. It can be anyone from a family member to someone who has saved their life or done a kind deed. I'm always intrigued by the common, ordinary folks out there who are heroes to someone. Ifmy memory senesmeright, there are many people that worked diligently to preserve Personal Attendant Care, TEFRA, Medical Assistance, Metro MotriJity*to list the four

main issues, although 'there Yet as you watch from afar were many other items on the whether she is acting as the list. defending attorney, testifLing before a legislative body, In order not to offend any one speaking to a legislator or by leaving their name off the speaking to you in person, you list, 1'11 will sprinkle one or will be able to see her fmstratwo profiles of people every tion and anger at the injustices now and then throughout the that are directed towards all year. Ifyou think ofsomeone people with disabilities.'This that should biin the spotlight, in turn gives her the power to write to me c/o ACCESS deliver her clear and pragmatPRESS. ic arguments to reach hergoal. It is Henry's quickgrasp ofthe This month, Anne Henry, of .laws and the way she interthe Minnesota Disability Law prets propedmlesand reguCenter, will be our hero. I met lations that helps people with Anne a young lawyer a few disabilities the most. years after I began my stint of lobbyingat the Capitol. With- It's irldividuals like Anne who out a doubt, she impressed me keep trying to make society a as a person who would remain little more accepting and see a strong advocate for individ- to it that LIFE GOES ON. uals with disabilities. It isn't We needto taketimeout tonot just her legalistic abilitythat is only thank Anne Henry, for so helpful, but it's her genuine all the hard work and endless interest and compassion for hours that she spends on our theindividualsshe'srepresent- behalf, but to also officially ing. recognize her as the first ofour heroes.

"One shouldjudge a society forced into nursing homes. make it on the outside. But the not by what the mqjority has, nursing home didn't want to but by what the minority is The Medi-grants are pushing let him out because they get a denied " people into nursing homes, and lot of Medicaid money if they -Hubert H. Humphrey a new Supreme Court ruling, keep him in the facility. AcIdell S. vs. Snider-our Brown cordingto the state, Lee should Most of non-disabled Ameri- v. Board of Education-is go- have been in a place that chargca has been taught to think of ing to have ramifications that es Medicaid $185,000 a year. those of us with disabilities as will conflict with the Medithe pitiable other; "those peo- grants. Idell S. lives in Penn- The nursing home said they ple". Clearly we are one of the sylvania and has MS whikh didn't know if they could get first targets in block Medi- flared up, so she went into a him up and dressed for his own grants to the states, which hospital. The hospital released hearing, so an attendantfriend passed Congress overwhelm- her to a nursing home. Since came in and made sure he was ingly. Clinton may veto the she was married with children dressed and at the hearing. bill to cut MedicareIMedic- she said that she wanted to live There was all the talk about aid. at home with attendant servic- they couldn't because of nurses. The state put her on a ing home policy, and state Disabled people are thought waiting list for services. Two policy, but what it came down of as sick which most of us are years later she was still on the to was they didn't want to. He not; we are disabled. We are waiting list. She sued for her couldn't just decide to leave the largestminority in thecoun- freedom, and the stateof Penn- thenursingUhome."He had to try made up of49 million peo- sylvaniafoughther all the way have a hearing to plead for his ple of every race, creed, and to the U.S. Supreme Cq&% A freedom. There had been a economic level. Every group number ofgovemorsWni oth- Free Lee Swenson Day at our has members in our club, in- er statesput pressure on Penn- state capitol, and several state cluding professional athletes, sylvanh became they knew officials drove down to the movie stars, and members of that it meant their states had to southern part of the state to be the very Congress which i$ pffer PCAs. She won; we all present at the hearing includallegedly saving ~ q a t 3 wwon, thecourt agreed that the ing Pam Erkel, State Director expense. L w ~ ~ Y . s ~ ~ " l i r o nstate e y . can't lock us up in nurs- of Home Care Prcignwit$%'@Td Instead it'll end up costing ing homes against our will. ,Karen Gibson, Policy Direcmore. but we'll get to that. tor for Home Care. Thev start-

-.A

ing what happens to us, it should be clearwhat will happen to all undenclases with this C

a cop, always wanted to be a had to contend with ~utheiicop, but he got ALS, Lou Granquist. -'=Y-4ad GherigYsdisease,andi:oh1dn't even draw hisgun. A bunch of 'Laitberm - .:- and his family :qxtora ' 6 w f h k &a ~ rh :~&xir&dhim thathe needed wd the America, ifyouremember,was to be in a nursing home. He Project drove down from Minto life, liberty, and the pur- tells me that it was seeing neapolis to be in Lee's comer. suit of happiness. People "WhenBillyBr&@HisHead" Since Mr. Granquist is a cross with disabilities are being dethat c o n v i n d him in h- a d GOvUS- cant. on p, I nied a lot more than out dreams because of this new legislation. Fora lot ofpeople it will be lik itself. Thoisands of Who knows better than you disabled people are being the PCA services YOU need? forced into nursing homes I've been getting the phone calls for monthr. Disabled At Allied Health Alternati.ves, We work with people who can live in the I YOU t0 create a health services partnership. I We'll provide competent nursing c o m r n u n i ~with ~ support die within a year or two when supervision that supports your goals and '

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WM. SMITH Realty. He took on tax clients, became general partner in real estate developments, and gave residential realtors a jolt with his then-new policy of fixedcommissions regardless of the size of the transAnd he made it. The bills were paid; the offices on Univershy Avenue maintained; Bill 111bought the home next door to mom and dad's and gavethem with wife Jennie's considerable help a pair of delightful granddaughters.

Life moved on

- like Bill -

quietly,steadily,progressiveTo those who knew him, he was the Mark Russell of Univesity Avenue; a bit less mu-

contfromp.1

His views were not impulsive ones;they wereadopted quietly, but studiously. Once set, they were forwarded 6-omsolid ground, with grace and - to the uninitiated - astonishing tenacity. Before Charlie's accident, Bill's experience with disability was limited to the occasional sore back. When dealing with the bureaucracy on Charlie'sbehalf, hewasgrateful forthe servicessocietyprovided - and he remained so until the end. But he saw as well the inequality, ineptitude and insensitivity. He saw his son suffer additional indignities as a result. On the surface, he accepted his and Charlie's lot. Beneath it, he resolved to work to change attitudes towardspeoplewithdisabilities.

That motivation, combined with Charlie's energy and editorial sensitivity, spawned Access Press in early 1991. Five and a half years later he was still researching and writing articles about inequities; the latest about the huge profitsofnon-profithospitals. And, he was still forrningstrategyto get companies to support the newspaper, and people with disabilities, not through charity but through advertising... It is said that one man, shoving with all his grit against an untetheredaircraficarrier,will eventually get it to move. If there's enough room, he might even give it some momentum before the dock ends. It might also be said that the

Bill Smith: A F Progressive Action (MAPA)

S" idem l i e to re ve civil fights an access

cous, perhaps, but no less the keen and acerbic observer of thegoings-on in Washington, St. Paul and other sea& of nrivilegss,pomp and power.

It is fitting that he was cerebmlly ushered from this reah; he was a naturally cerebral man. A throwback to a less caustic and clamoring erq he tinged his professorial style with charm and elegance. He never raised his voice. He never had to. Few wished to wrestle with either his intellector his wit.

Based on available numbers, he discovered that in Minne sota alone, there are some 400,008-750,000personswith disabilities. Hundsedsofthousands of ordinary peoplewith ordinary needs, denied access to thase things that other peoplekkeforgranted. Hesought the cammunications vehicle â&#x201A;Źhat might link the voices of such people, that they might be heard, and valued. He found none - and resolved to fili that communications gap.

implacable igmmwe of both the needs and thevalue of perSOBS wivh disabilities lay on them with the weightofagiant ship. Bill spent the last five years of his life attempting to dislodge that weight. Quietly, with integrity, class, wit and a boundless resolve, he established a momentum.

For the next couple of years, Bill Smith came to the end of we worked together on a houshis dock. But. ..did you ever ing project. They brought try to stop an aircraft carrier? , dong their sen, Charlie. Together, we raise'd money, bought a four-plex, made it accessible and developed and

I HOME HEALTH CA

tions wheretheys w t e d that residentsshould control where they l b w d - p w ~ w ideas ba< b l y awakm i % r u m .movement. Afierwards, a couple approached us saying that they wanted to work with us. They were Bill and Renee Smith. Unlike mmt of the peopleassembled etevming, self-determination was common sense to them.

I-y,he passed on his knowledge There was always coffee and in an unassuming way #ktst-mulating convenation. emp&vered each of us. Lastm~~thdurmgatoughday, b r i n g thaf same time my I stopped by the office. I had young life was shatreFed by a mparticularreason to bethere. divorce. Most SmIdaynights I didn't needaae. Bill, Charlie after we were done building, I and I talked about Paul followed the Smiths home Por Welbtone's re-election, the dinnerand canversathan. I was consolidation afwealth among am&. The guy could cot&, # t e ' q x r rich a d accessible too! We would talk into the health care. Bill was starting night about anything -poli- tolwk intowhereallthehealth tics, jazz, novels, cars, eco- care dollars inMinnesotawere nomics, wm@t iron or&irlYs going. He had a pot of lentil basketball. Their daughter, soup on the stove. Bridget, was an emerginghigh school star. Bill knew about 1 cry this morning as 1 write and was interested in almost this. A friend who had a dignieverything, Hewas the closest ty of spirit and zest for life has to a Renaissance man that 1 died. While 1feel an immense loss, this is n& a tragedy. He died as he lived filled with ideas and'plans. He was researching health care. He had scheduled a scuba diving trip to the Caribbean. The next issue of Access Press is due out. Bridget is about to give birth to a grandchild.

What does it take to build a strong nest for your little ones? i

Available 24 hours per day Specializing in the care of Children Adults Elderly We provide Personal Care Assistants Home Health Aids Homemakers Live-in Caregivers Nursing Our Rehabilitative Services include: Physicall OccupationaVSpeech/Respiratory Therapies PCA Provider Organization WWaiverlMedicare Certified

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Resources and support for your family A place to meet other families with y m g children ages 0-6 Home visits, phone calls, and family events in the community ,

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Bill quietly supported many of us. Aswith thatfour-plextwenty years ago, he knew how to knock down walls and build ramps. And most importantly, he empowered many of us to do the same.