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Person-Centered Planning with Youth and Adults Who HaveDevelopmental Disabilities.Minnesota Univ., Minneapolis. Inst. on CommunityIntegration.; Minnesota Univ., Minneapolis. Research andTraining Center on Residential Services and CommunityLiving.

Administration on Developmental Disabilities (DHHS),Washington, DC.; National Inst. on Disability andRehabilitation Research (ED/OSERS), Washington, DC.1998-00-0031p.; A "Feature Issue", with all 17 articles on the themesubject.90DD0506/01; H133B980047Institute on Community Integration, University of Minnesota,109 Pattee Hall, 150 Pillsbury Drive SE, Minneapolis, MN55455; Tel: 612-624-4512.Collected Works Serials (022) Guides Non-Classroom(055) -- Reports Descriptive (141)Impact; v11 n2 Fall 1998MF01/PCO2 Plus Postage.Adults; Change Strategies; Decision Making; *DevelopmentalDisabilities; *Empowerment; Long Range Planning;Organizational Change; *Personal Autonomy; RehabilitationPrograms; Secondary Education; *Self Determination;*Transitional Programs

This feature issue of "Impact" focuses on person-centeredplanning with youth and adults who have developmental disabilities. Featuredarticles include: (1) "Centering on People: A Quiet Revolution" (Judith A.Snow); (2) "Look-and Understand-before You Leap" (Brian Abery and MarijoMcBride), which describes the basic principles and values underlyingperson-centered approaches to planning; (3) "Person-Centered Planning: MAPSand PATH" (Jack Pearpoint and Marsha Forest), which describes a process thatcollects information about and creates a holistic portrait of a focus person,family, or organization (MAPS), and describes an eight-step tool that plansbackwards, leading individuals, families, and organizations fromidentification of a vision for their future to specific actions to get movingon the journey to that future (PATH); (4) "Our Family's Maps" (Bryn, Clark,Lindsay, and Kalli Fortune); (5) "Person-Centered Planning and the Quest forCommunity Membership" (John O'Brien and Connie Lyle O'Brien); (6) "The TrueConductor of Tim's Life" (Karen Holt); (7) "A New Way of Planning forMichael" (Joann Sorem); (8) "Who Can Facilitate Person-Centered Planning?"(Jack Pearpoint and Marsha Forest); (9) "Circles of Friends in Planning withStudents" (Gerv Leyden, Colin Newton, and Derek Wilson); (10) "Becoming DreamCatchers; Person-Centered Planning and Youth with Severe Disabilities" (AnneMalatchi) ; (11) "A Plan Is Not an Outcome" (Michael W. Smull); (12) "CreatingPerson-Centered Organizations" (Ron Spoelstra); (13) "Living Person-CenteredPlanning in the Village of Kumbayah" (Shina Asante Ahad and Bahiya CabralAsante); (14) "Planning for Systems Change in Alaska" (Karen Ward, GordonWard, Brenda Ross, Robyn Rehmann); (15) "A Person-Centered Approach to SchoolSystem Planning" (Ken Woodley); (16) "It's for All of Us, or Not at All"

+++++ ED425571 Has Multi-page SFR---Level=1 +++++(Andy Smith); and (17) "What's Most Important? 'Tis People..." (Te RipowaiHiggins). The issue closes with an 11-item list of resources aboutperson-centered planning. (CR)

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IMPACT

Feature Issue on Person-Centered Planning with Youthand Adults Who Have Developmental Disabilities

2

U.S. DEPARTMENT OF EDUCATIONOffice of Educational Research and Improvement

ED .1 CATIONAL RESOURCES INFORMATIONCENTER (ERIC)

This document has been reproduced asreceived from the person or organizationoriginating it.

0 Minor changes have been made toimprove reproduction quality.

Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or Policy.

Feature Issue on Person-Centered

Planning with Youth and AdultsWho Have Developmental Disabilities

Published by the Institute on Community Integration (UAP) Research and Training Center oti Community Living Volume 11 Number 2 Fall 1998

Using person-centered planning, members of the Fortune family, including Lindsay and Kalli (above), have had

the opportunity to voice fears and dreams for their lives, and to plan their futures. See story on page 6.

Centering on People: A Quiet Revolutionby Judith A. Snow

Not so long ago just a generation there was no person-centered planning. In thelast 20 years, however, a quiet revolution has been taking place in the way personswith disability labels are perceived and supported.

We have begun to believe that individuals who are called "disabled" are first of allpeople. At one time this thought would have been dismissed politely but quickly; itstill is in some places. Formerly, the universal perception that disability invalidated allother characteristics of an individual gave rise to blanket, usually mass, treatment oflabeled people. "They" were viewed as dangerous, burdensome, non-human creatures.To have a disability was to be without the capacity for relationship, participation, re-sponsibility or intimacy. Now, some of us are willing to see and support these humancapacities in everyone.

We have also begun to believe in and experience the value of planning with indi-viduals. To plan is to believe that the future is not a given, but can be shaped in the di-rection a person desires. Even more importantly, we are willing to try planning alter-native futures that may be better not just for the individuals themselves, but also forthe various communities in which they participate. We dare to carry out our planningin ways that encourage communities to encounter the capacities, contributions, anddifferences of labeled persons and that benefit as many people as possible.

And, we are not centering our efforts on the caregivers and providers, as importantas they are. We are focusing on the individuals who are made vulnerable by beingphysically or functionally "different." We have created vehicles for discovering and

ISnow, continued on page 261

3

From the Editors

We are in the midst of a shift in the delivery of

services to persons with developmental

disabilities, a shift toward an emphasis on

outcomes.That raises a question, however:

Whose outcomes? Person-centered planning

provides one response to that question. It seeks

to create the outcomes desired by youth and

adults with disabilities as expressed through a

process that uncovers their beliefs, values,

strengths, and dreams, and develops action

plans to move toward the lives they desire.

As word about person-centered planning

has spread, so have mistaken notions about

what it is and how it can be used.This Impact

presents person-centered planning from the

perspective of a number of leaders in its

development and implementation, authors

who passionately and skillfully describe the

values, attitudes, and practices associated with

person-centered planning at its best.

An additional note: Herb Lovett, a visionary

colleague in the disability field, had agreed to

contribute to this issue.Tragically, he died in a

car accident on March 21,1998.We decided

that his leadership would not be set aside, so

we have selected quotes from his newest book

and used them throughout this Impact. These

excerpts will, we hope, encourage readers to

further explore Herb's wit and wisdom, which is

the best tribute we can offer.

What's Inside

Overview of Person-Centered Planning

Strategies for Person-Centered Planning

Personal and Organizational ProfilesResources for Further Information

The College of Education& Human Development

UNIVERSITY OF MINNESOTA

2

Look and Understand Before You Leapby Brian Abery and Marijo McBride

So, your agency or school wants toadopt a person-centered approach toservice planning. Why? Because youheard that "it will revolutionize the man-ner in which the planning of services forpersons with disabilities is undertaken"and "people will experience an enhancedquality of life?" Because you think that

At almost all levels of the

educational and human service

delivery systems, organizational

change is needed f person-

centered planning is tojlourish.

the individuals you serve will like it,families will be supportive, and peoplefrom the county or state will be pleased?Because with the development of natu-ral supports you may save some money?

What we have above could be arecipe for disaster. Within the past fewyears, an increasing number of organi-zations including schools and adultservice providers have been "experi-menting" with person-centered plan-ning. More and more individuals are be-ing trained as person-centered planningfacilitators and the lives of greater num-bers of persons with and without dis-abilities are being affected by this alter-native approach to traditional serviceplanning. The question we must nowask is whether person-centered planningis really going to change the manner inwhich we conceptualize and providesupports to persons in need of them, orwhether it's a fad that will eventually bereplaced by yet another new approach.

We personally believe that if used inthe manner intended by its developers,person-centered planning has the poten-

tial to profoundly enhance the lives ofall persons whom it touches. The con-cern we have is that many individualsand organizations are attempting toadopt this approach without really un-derstanding and embracing the valuesand assumptions upon which it is based.As a result, in some cases these tools arebeing used ineffectively and in a mannerother than that for which they wereoriginally intended (i.e., that intentionbeing to facilitate focus persons workingtogether with their circles of support todevelop the lives they desire). What canwe do to ensure that we use these toolsin a manner that supports all people tomove toward realizing their personal vi-sions for the future? One answer is thatwe can understand what the adoption ofperson-centered planning and servicedelivery entails, and make an informeddecision about whether or not to takethe great leap and adopt it.

Why Person-Centered Approaches?

Often, when an organization changesthe manner in which it operates, the rea-sons for the change are thought to be ir-relevant. It is the outcome that mattersmost. However, the "why" that lies be-hind an organization considering achange to person-centered planning andservice delivery is extremely important."Everyone is doing it," "We think we canincorporate it into our current IHP/ISPplanning process," "The state or countywants us to," and "It will make it easierfor us to find programs for people" areall reasons for a switch to person-cen-tered planning that we have heard fromschools and adult service providers.What's wrong with such motivations?

First, they are contrary to the basicprinciples and values underlying person-centered approaches to planning. Thatfoundation consists of a focus on per-sons rather than programs, on theunique gifts and capacities of each indi-vidual, on personal choice and self-

determination, and on collaboration be-tween all who truly care about the indi-vidual. It is not about forcing people toplan for their futures in a manner inwhich they may not desire, fitting theminto available programs, or helping pro-fessionals maintain control over the livesof persons they have pledged to sup-port. When person-centered planning isadopted in the absence of a true com-mitment to the basic values and prin-ciples in which it is grounded, in thelong-run the organization is unlikely toremain true to supporting individualsto achieve their visions of a better life.

A second problem that often occurswhen organizations adopt person-cen-tered approaches for the reasons notedabove is that the planning processquickly becomes divorced from the ac-tual provision of services. Althoughplanning may focus on the individual,the provision of services remains sys-tem- or organization-centered. In suchsituations, the only aspects of a personalvision for which one can expect to re-ceive support are those that do not upsetthe system, that allow it to operate in themanner in which it currently functions.When one's vision for the future doesnot fit the ways in which things have tra-ditionally been done, when it requiresthe system to do things differently, it islikely to be ignored or negated.

Person-centered planning requirescreativity, doing things differently, andgoing against systems that in many casesseem more interested in regulatingpeople than ensuring that they receivethe type of support and services that al-low them to live the kind of lives thatthey desire. As its developers so oftencaution, this approach is not just aboutplanning and creating visions, but aboutassisting people to make their dreams areality. It is a process that starts andnever ends, one that involves an ongoingsearch for avenues through which indi-viduals can realize their possibilities.This can only be achieved if the entire

process of providing supports not justthe planning is person-centered.

In examining why they desire toadopt person-centered approaches toplanning, it is hoped that organizationswill discover that their desire for changeis based upon a genuine concern for do-ing all that is possible to assist others to:

Discover, celebrate, and further de-velop the capacities that lie withinthemselves.

Become more interdependent and anintegral part of the community.

Dare to dream and work towards afuture based upon their personalpreferences.

When the desire to use person-centeredplanning is driven by this set of idealsand values, it is significantly more likelythat the resources necessary to supportthis approach will be available; if theyare not, people will create them. It is alsomore likely that the person-centered ori-entation will extend beyond planning tothe provision of services and to the dailyinteractions that all members of a pers-on's circle of support have with eachother and additional individuals. And,when the question of why one desires touse person-centered planning is an-swered in the manner above, the prob-ability that those who provide supportswill, over time, remain true to its idealsand application is greatly enhanced.

What is Necessary to SupportPerson-Centered Approaches?

Experts who have studied the manner inwhich new ideas are introduced into or-ganizations have, for years, realized thatit is considerably more difficult to sus-tain change than to initiate it. Adoptinga person-centered approach to serviceplanning and provision is one thing,nourishing it to the extent that it will re-main strong and grow is quite another.There is no question that, at almost alllevels of educational and human servicedelivery systems, organizational changeis needed if person-centered planning isto flourish. Rules and regulations that

seem designed more to protect schooldistricts, provider agencies, counties,and states from liability than to enrichthe lives of persons with disabilitiesneed to be dismantled, or at the leastimplemented in ways that allow for theexpression of their intent. This includesensuring that "adult protection plans,"vulnerable adult status," and other ser-

vice system regulations and labels arenot used to (a) prevent people with dis-abilities from taking reasonable risksand controlling their own lives, (b) avoidauthorizing the more flexible use offunding so that youth and adults havethe resources necessary to work towardtheir dreams, and (c) inhibit supportingthe inclusion of persons within theirschools, workplaces, and communities.

The manner in which formal sup-ports are provided to persons with dis-abilities is a second area in which orga-nizational change is needed. This in-cludes clarifying the roles support staffplay in the lives of persons with disabili-ties so that it is understood that they areemployees of the people whom they arepaid to serve and, as such, need to sup-port individuals to get what they wantout of life rather than "controlling" or"programming" them. It also entails giv-ing staff permission to push the limitsof the service system, to challenge bothinternal and external rules, regulations,and policies that get in the way of indi-viduals leading the lives they desire. Allstakeholders in person-centered plan-ning and service provision includingfocus persons, families, friends, staff,community members, policymakers,and administrators need to be bettereducated about the process and its pos-sibilities so that they are able to more ef-fectively collaborate in efforts to help in-dividuals live they lives they desire.

Finally, there must be a long-term or-ganizational commitment to person-centered planning and service provision.This commitment needs to include en-suring that sufficient resources such astime and energy are made available toperson-centered planning, creatingongoing opportunities for all parties tolisten and respond to the concerns of

Mbery, continued on page 26.1

5

What Person-Centered

Planning is ...

A set of values and strategies that can be

used to assist an individual in creating a

vision for the future and a plan for working

with others toward realizing that vision.

A process involving an individual and

those who care about that individual that

explores a person's experiences, leads to

understanding of the person's core beliefs,

discovers the person's gifts and capacities,

facilitates listening to and valuing the

person's dreams for the future, and results

in plans of action carried out to try to make

those dreams come true.

A use of planning strategies that focus on

people rather than on services or programs,

driven by individuals' unique visions,

preferences, likes, and dislikes.

A perspective that sees people's capacities,

building on the strengths, gifts, and abilities

of individuals and their circles of support.

A collaborative effort, involving those who

know an individual well and are willing to

commit to taking the action necessary to

support the person in achieving his or her

life vision.

A creative and challenging approach that

encourages innovation and risk-taking,

which may shake-up the status quo of

educational and human service systems.

A fallible process that may not work for all

people in all situations at all times in their

lives.

An ongoing journey that requires

adaptability, flexibility, and support not

only during initial planning, but also over

the long-haul as plans are implemented,

revised, and implemented again.

3

4

Person-Centered Planning: MAPS and PATH

by Jack Pearpoint and Marsha Forest

We had great difficulty writing this ar-ticle. The reason is that we weren't surewe knew exactly what "person-centeredplanning" really means. Our confusioncame from our history.

We developed MAPS and PATH* andused them for several years when somepeople started to refer to them as "per-son-centered planning" tools. We knowthat there is a constellation of such toolsdeveloped to help people and organiza-tions make real and meaningful change.They include Individual Service Design,Lifestyle Planning, Personal FuturesPlanning, Essential Lifestyle Planning,MAPS, and PATH, along with others.Our confusion is that with the popular-ization of the term, it may be overused,abused, get fuzzy and lose its meaning.We hear many things being labeled per-son-centered planning that have little todo with the common sense of being fo-cused on human beings. That confusesus. We're comfortable if people want tolabel the tools we use "person-centered",if they really help meet human needs.

So, we embrace a definition of per-son-centered planning that says it is agroup of methods of action focused on aparticular human being (or group of hu-man beings such as families and organi-zations) who want to create a map ordiagram for the future. Using this defini-tion, we have decided to write aboutwhat we know best MAPS and PATH.

Understanding MAPS and PATH

MAPS and PATH, first and foremost, aretools to help restore dreams and ignitehope and then begin to plan new, con-structive futures. For us, MAPS andPATH are not just another way of doinga service or review plan. They representa different way of thinking.

MAPS is a process that collects infor-

MAPS (no acronym) a MAP is a map. Developedby John O'Brien, Marsha Forest, Jack Pearpoint, JudithSnow and David Hasbury. PATH Planning AlternativeTomorrows with Hope was developed by JackPearpoint, John O'Brien and Marsha Forest.

mation about and creates a holistic por-trait of a focus person, family or organi-zation. During the process, participantsrespond to eight questions that lead thegroup through a focused reflection, ulti-mately identifying ways that a commu-nity of people can draw together to sup-port individuals to be full participants indirecting their own lives. PATH is aneight-step tool that plans backwards,leading individuals, families, and orga-nizations from identification of a visionfor their future to specifying actions toget moving on the journey to that future.Both are facilitated processes that in-volve a circle of people and use visualimagery and colorful wall graphics as in-tegral parts of the planning.

MAPS and PATH are designed ashealing tools. They are in fact morespiritual than technical, which is one ofthe reasons they are difficult to bureau-cratize. They must be used with skill andheart, rooted in an ethic of "do noharm." This is not simply a matter of"technique." It is more of an art. Thereare technical competencies that must bemastered, but this is not the difficultpart. It requires first of all an alternativeview of our role as facilitators, taking arole of truly listening to people's dreamsand nightmares. Next, those hopes andvisions must be shaped into sustainableimages. Finally, there is a translationinto practical daily routines that moveus safely in the direction of the dream. Itrequires giving over control, movingfrom a position perceived as "powerover" to "power with" and "power to."

Using the Tools

The answer to "when" to use MAPS andPATH is, "When they are needed. Wehear people voicing concerns that MAPSand PATH are being mutilated, man-dated, perverted, and used incorrectly. Itis true. They are. However, the biggertruth is, we have no control over whatpeople do. Thus, our choice is to focus

on creating the best tools we can, andproviding the most human and thought-ful guidelines and training we can devisein the hope that people using the toolswill do no harm. We know that the keyproblem in the misuse and abuse oftools is not in the design or regulation ofthe tools, but is in the spirit of theimplementors. People who want to exertpower over others will use any and alltools to enhance their control. The onlycontrols we can or choose to exert areclear ethical guidelines. Thus, if peoplewith power choose to plan "for" peoplewithout having them present, the labelon the tool makes no difference, butsimply becomes another deceptive shellgame to take or sustain power.

There are two preconditions for ethi-cal implementation of MAPS andPATH: presence and listening. Presence isthe first layer of ethical implementation.Those with the skills to make thingshappen, must "do what it takes" andmake sure that the seldom heard voicesare heard clearly and in full voice. Thismeans no one ever plans alone. It meanssomeone who has difficulty speakingwith words has friends and loved oneswith them to ensure that their voice,their ideas, are heard clearly. It does notmean that every whimsical idea becomesa goal. But, it does mean it is not ethicalto plan for a person if the person is ex-cluded from the process.

In a MAP or PATH, friends and col-leagues struggle together with complexrealities and make difficult choices.Good facilitators create a safe space thathonors the dreams, nightmares, aspira-tions, and talents of the focus person.There is no guarantee of the good life.There is no magic bullet. MAPS andPATH are simply tools to help someonecreate and plan their own life.

Listening is the heart of MAPS andPATH. We believe that actually listeningto one another is foundational for thesetools. Through listening (not rebuttingand arguing) we gather the best infor-

A portion of an individual's PATH as drawn by Jack Pearpoint during a planning session.

mation and resources we can muster,then we make the best decisions we can.There are no magical wands. There isjust the hard work that all of us-must doto realize fully lived lives in these com-plex and challenging times.

Good facilitators hold empty con-tainers (questions) in front of people,then wait, and listen to the silence. Thetension in this silence creates a safespace for people to fill with their deepyearnings and simple unspoken needsthe stuff of life. As facilitators, we holdthe empty space in front of the focusperson, and ensure that their ideas andwishes are heard. Hearing does not im-ply agreement, but simply honest, accu-rate listening to the message. Then thework begins of determining what to do.

Journeying Together

We wish that by designing good tools,and using them well, we could guaranteea healthy positive future for us and forothers. Unfortunately, there is no suchguarantee. What we can say is that if wedo not plan well and work hard, the inci-dence of abuse and trauma will be high-er. We can tell you from our own experi-

ence that "being on the journey", engag-ing in the struggle for a meaningful life,is the best guarantee anyone can offer.No one can promise that anyone willreach a specific goal, but we can at leastguarantee that the journey will be a fas-cinating one. As Helen Keller said, "Lifeis a daring adventure, or nothing at all!"Choose life!

MAPS and PATH are healing tools ona spiritual journey. They are not just an-other chart or meeting. With humility,facilitators endeavor to enhance thestrengths and capacities of every focusperson. To do this, facilitators must cre-ate of a zone of safety. People who can-not create a safe place for a person to un-furl their most delicate and fragiledreams and fears should stay away fromthis type of work. Hearing another'sdreams and hopes is a sacred trust. Shat-tering dreams must not be done! Para-doxically, the art is to balance dreamswith doable, positive and possible steps

steps that can and will be imple-mented by a group of people workingtogether. MAPS and PATH are aboutcreating the links between the dreamswe all have (no matter how fragile) andthe practical daily steps that begin and

[Pearpoint, continued on page 26]

7

Taking a New View ...

Over time, I have gradually come to see that

people whose behavior is difficult are not

clients to be"fixed"so much as freedom

fighters the most vigorous critics of our

attempts at service.Time and again, I have

worked for people who have either told me

directly or whose behavior has said:"These

people who work for and around me are

nice enough, but what they are doing is

either irrelevant or detrimental to my

wishes, my happiness, and even, at times,

my survival."

My experience has been that extreme

behavior often comes from not feeling

listened to. Just as repressive organiza-

tional or political systems lead to

aggression and revolution, the most

profoundly disturbing behavior is often

found in incompetent and unresponsive

service systems.

Seeing people in a lateral rather than a

hierarchical relationship opens us to the

perspective that all disability is necessarily

mutual. If people cannot communicate with

words, then we cannot hear them. We

might just as honestly describe a person's

"learning disability"as our own "teaching

disability."Traditionally, the words

"handicap"and"disability"have been

labels defined and applied by professionals.

In a world dependent on authority, such a

label has the power to oppress by stealing a

person's individuality, and a collective

stereotype replaces personal consideration.

In a more mutually responsive world, labels

would simply point out what people need

and become a mandate for our help.

Excerpted with permission from Lovett, H. (1996).Learning to listen: Positive approaches and peoplewith difficult behavior. Baltimore: Paul H. BrookesPublishing. Page 6.

5

6

Our Family's MAPS

by Bryn, Clark, Lindsay, and Ka lli Fortune

In an attempt to understand the MAPSand PATHS processes for her work in a par-ent leadership program, Bryn Fortune at-tended a facilitator's training workshop.She was so impressed with the process, thatshe signed up the entire family to attend an-other MAPS opportunity, and completefamily and individual MAPS. Below aretheir perspectives on the experience.

Bryn and Clark

As often happens, unexpected blessingsoccur when we step out and try newthings. As a result of a professionallymotivated educational experience, ourfamily wound up with a fresh look atourselves in an affirming, revealingprocess called a MAP.

The MAPS process has

allowed us to think about and

communicate some important

feelings and information we

often neglect in everyday living.

The experience was powerful, risky,and at times very uncomfortable. In gen-erating our family's MAP, our twodaughters each told their heartfeltdreams and nightmares. Both childrenhave significant challenges to their phy-sical health and the youngest daughterhas "differing abilities." Relative to otherchildren their age, both have unique per-ceptions of the world, life, and spiritual-ity. As parents, it was very sobering tohear the girls discuss their health fears,and exciting to hear their dreams of col-lege, boys, and future children.

Lindsay, our youngest at 12 years ofage, shared her nightmare. It was about

losing her gift to communicate. Herdream was of a huge white mansionwith servants, a chef to cook her specialdiets and make them palatable, an in-door pool, a lake and ski boat in the rear,and a multiplicity of automobiles in thegarage. Kalli, our older daughter at 15,dreamt of her own space, a loft in a highlocation. Later, we found that Lindsay'sprincipal desire for a white mansion wasto house the homeless, and Kalli's desirefor a loft was to have a safe haven whereshe could rest, be supported, and beworry-free.

As parents, our principal nightmareswere the hell of surviving the loss of thechildren to physical illness, and beingisolated, without the support and loveof family. Our dreams were being con-nected to a large circle of friends, anddeveloping our family's shared sense offaith and of spirituality.

All of these feelings were powerful,very uncomfortable, and risky to an-nounce to a group of people, even ifthose attending the MAPS session werefamily and friends. The courage to ar-ticulate those things that you fear, thepermission to kick back and dream ofwhat might be, and the acceptance ofsupport from those in your MAPS circleare all liberating and stretching activi-ties. As a personal development tool, theMAPS process has shown its strengths.As a family it has allowed us to thinkabout and communicate some impor-tant feelings and information we oftenneglect in everyday living. Each of usfeels blessed to have had this opportu-nity and experience.

As a family, we often pull our MAPSout on the living room floor and talkabout the action steps we have accom-plished and the ones we are still workingtowards. We have moved closer to ourdreams! The clarity and hopefulnessthat the MAPS process brings forth is anincredible gift. We encourage every fam-ily to participate in the MAPS processbecause it can truly change your life.

Lindsay

During the MAPS process, I felt a lot ofemotions. Some were anger and somehappiness. During this time, I was be-coming aware of my feelings. I reallylearned about my path, and that is themain reason I wanted to have it done. Ihave a strange one, very complicatedtoo, and I felt like it needed to be putdown on paper. I learned about my la-bels, about my hospitalization. I learnedabout how my parents stood up for me,and said I was smarter than what theschool system thought I was.

Through this time, when I was help-ing with my path and hearing about mypath I was having a lot of emotions. Italmost felt like you have to be older tohandle a path. How old? I don't know,but very mature. Some of the feelings Iwas feeling were happiness, sadness, ex-clusion, and madness. With my circle offriends I was able to cope, though, be-cause I was being supported.

My nightmare was kind of tough. Isaid losing my gift of communicationwould be my nightmare. But I knew thatwouldn't happen. Lots of other parts ofmy MAP would be a lot easier.

My dream was one of the fun parts.During this time, I felt happy, and joy-ful. I look at it on the MAP and I see it ispossible. One of the biggest things I wasdreaming for was a large mansion. Mymom always thought it was ridiculousthat I wanted one until she found outwhy. I think during a MAP, people expe-rience emotions, realize opportunities,and much more. I have felt that I couldpossibly do whatever I wanted to do.And I think that is wonderful.

The last part was goal planningplanning how I can strive to reach mygoal. This involved my whole circle offriends. I think this was a very impor-tant part because with my planning mygoal or dream could be reached. I thinkthat is pretty neat.

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Bryn, Lindsay, Kalli, and Clark Fortune with one of their family MAPS.

Kalli

I thought MAPS was a very useful pro-cess. With all of my family there, I toldmy story from my point of view. Maybethey learned some things about mystory that they did not previously know.I certainly learned some new thingsabout my sister Lindsay's story when shedid her MAP. When we did the gifts andqualities part, it was really good to hearwhat my circle thought of me. I hadnever heard so many "warm-fuzzies"about me all at once. That part certainlyfelt really good.

But not all of it was "feel-good." Partof telling my story was hard. WheneverI got to my disease part, it was hard totalk. However, it was strange, because Ifelt better after talking about all of thatbad stuff. Talking about the nightmarewas hard too. I suppose it's because Idon't want to face the bad things. I un-derstood that it was a necessary part ofthe process, so if I ever have part of mynightmare in my life, I can recognize it.I know that the family MAP was reallyeye-opening. I heard a lot about Momand Dad that I had never known. Ididn't realize that it was such a strugglefor Mom to marry Dad because she wasleaving her family or that Dad felt guilty

about having to stay in Peoria, Illinois,for a little while before he could move upto Farmington with us. They were justlittle stories like that which really sur-prised me. I had never thought aboutany of that stuff.

Doing the family dream was reallycool. I had never thought about our fam-ily dream, either, so it "forced" me tothink about it. Plus, I sort of figured outthat we all have a similar family dream.

I would do a MAP again in a flash. Itgave me some direction, some plan withwhere I want to go, some steps on how todo it. I didn't know what to expect whenMom said that she signed us up for theworkshop. I didn't know what to expectwhen I found out that I was going to havemy MAP done. But maybe that was okayanyway. I went in to it with an openmind, and came out very refreshed withnew knowledge.

The Fortune family lives in FarmingtonHills, Michigan.

Taking a New View ...

In the world of positive approaches, we

work in collaboration and in a spirit of

openness, honesty, and equality.We make

decisions by listening to all the people in-

volved (not just the person, the family, or

the professionals, but all of them); in the

context of the personalities, needs, prefer-

ences, and strengths of those involved, we

come to some decision.This contrasts with

how many services are organized. We may

say we are working for the good of people

with disabilities, but what that is and how

it is to be achieved is decided for them. In

many services, we respond to whoever can

force us to respond.Too often we make

compromises that come from resignation

rather than from negotiation. Many deci-

sions are made because of policy rather

than because they make sense to the

people involved....

Inclusion requires behavior changes, but

we have consistently looked in the wrong

places to achieve them. Inclusion requires

behavior changes of the majority currently

content with the status quo.When we pro-

fessionals assume that people with behav-

ioral differences have to change ( and can-

not really belong in society until they have

changed), we run the risk of becoming the

most dangerous kind of protector oppres-

sors: people who not only keep others op-

pressed, but also insist they are helping

while they do it.

Excerpted with permission from Lovett, H. (1996).Learning to listen: Positive approaches and peoplewith difficult behavior. Baltimore: Paul H. BrookesPublishing. Pages 233 & 12.

7

8

Person-Centered Planning and

the Quest for Community Membershipby John O'Brien and Connie Lyle O'Brien

How can person-centered planning con-tribute to building communities compe-tent to include people with developmen-tal disabilities as contributing members?Failure to actively and thoughtfully en-gage this tough question unnecessarilylimits the effectiveness of person-cen-tered planning approaches as tools forsocial change.

The image of a "quest" provides

a way to think about the

relationship between person-

centered planning and

community building.

The image of a "quest" a difficultsearch through unknown territory forsomething that seems good to the heroprovides a way to think about the rela-tionship between person-centered plan-ning and community building. The storyof a quest answers at least five questions:1) What does the hero seek, 2) Who arethe hero's companions, 3) What are thechallenges and aids offered by the terri-tory through which the hero journeys,4) What prices must the hero pay to con-tinue the journey, and 5) How does thequest change the hero? Each of thesequestions opens a window on the effec-tiveness of person-centered planning.We will look through just one of thesewindows by asking about the nature ofthe territory through which a person-centered plan invites one to travel.

Where does the person-centered plan-ning process point the focus person andhis or her allies? What sort of socialspaces does the process suggest as places

in which unknown troubles might be en-countered on the search for what seemsgood? Obviously, specific answers mattermost: In which places and among whichpeople within reach might this particularperson find what matters most to him orher at this time in life? However, practi-tioners of person-centered planning willdo well to first take a step back from thespecific and consider through which ofthree types of social spaces the plans theyfacilitate encourage focus people andtheir allies to travel.

John McKnight (1995) introduced usto the idea of social spaces and their im-portant effects on social policy, thoughhe can't be held responsible for the usewe make of it here. Three types of socialspace have implications for person-cen-tered approaches to life planning. Man-aged space can be defined as bureaucraticspace, highly controlled space that re-quires dependence and obedience; it ismaintained through establishing a stabil-ity that can counter challenge to its au-thority. Private space is characterized byindividualism and isolation, "going italone." Shared space is interdependentspace, where teamwork, collaboration,cooperation, and sharing are practiced.McKnight points out many disadvan-tages of making policy based on a too-simple map of social life, a map that of-ten excludes shared space and the asso-ciations that people create when they as-sume responsibility for naming andsolving their own problems together.Policy often highlights either bureau-cratic structures or individualistic pur-suits as the sources of good things, weak-ening community by directing resourcesinto bureaucracies or private pockets,and discouraging people from workingtogether to handle their own difficulties.

Although person-centered planningmakes only a modest difference in com-munity building compared with policiesthat sink billions of dollars into pro-

grams that segregate and control peoplewith disabilities, we think it's worth-while for person-centered planners tomake this modest difference, both forthe real benefits to the people involvedand for the lessons their experience canteach receptive policymakers. So we sug-gest that person-centered planners re-view their work by asking, "Do the plansI facilitate focus people's attention pri-marily on journeying through managed,private or shared space?"

A quest that stays in managed spaceis a search for more comfortable client-hood or more powerful professional in-terventions. It does not disturb thephysical and social distance that sepa-rates people with disabilities. It asks forbetter use of the professional authorityover people built into program struc-tures. The quest concludes when staffadjust what they do to better accommo-date the person within a service. Assist-ing a much anticipated trip to Disney-land, assigning a paraprofessional tosupport a student in a general educationclass or getting approval for a transferfrom an activity center to supported em-ployment could each be worthy goals ofa quest that stays in managed space. Thechallenges on a journey in managedspace include programs designed withthe assumption that people will adjustto fit them, inflexible readings of regula-tions and budgets, and staff fear thatchange might involve heightened liabil-ity, conflict or inconvenience. Help willcome from personnel who identify withthe focus person's desire and decide tocreate the flexibility to accommodate it.

Partly in reaction to dependence onstaff benevolence for journeys in man-aged space, some reformers link person-centered planning to self-determination,a system change that increases people'scontrol of an individual service budget.This places the focus person in the roleof service consumer and sets free the

1

Role Client,

Managed Space

/ /13

\/ /I:1

Shared Space Private Space

Work Shopping-----_,/

student Member

I

Home Services0 b b

patient , special ed Consumer

Boundary "Professional business." "Our business." "My private business."

Process

Deficiency Eligibility

+Assessment

lirTreatment

Desire

I

Cash

11,Product

Choice

Reciprocity

Deciding who belongs

and what the mission is

Orientation "We're doing this for your "What do we want to do

own good." together?"

"Buyer beware."

Danger Lost in segregation and Narrow requirements for

control. conformity.

Lost in isolation and

alienation.

inventiveness of journeys in privatespace. In this space, the key question is,"How do you want to live (given the lim-its of your budget and the kinds of sup-ports that are offered)?" A journey thatstays in private space finishes when thecustomer is satisfied enough with theservice product to close negotiations.This shift in the balance of power cre-ates new responsibilities: the consumermust become informed enough to have abasis for evaluating and negotiating aservice provider's offer and deliveredservices; the consumer must find waysto stretch or adjust the individual bud-get when the cost of their requirementsfor assistance changes; the consumermust become an effective employer ofsupport workers; and the consumermust decide how to live. These journeyschallenge allies about when and how totry to influence the focus person's deci-sions or confront the person about ap-parent problems. Help comes in theform of small breakthroughs as the fo-cus person realizes the excitement ofhaving and solving daily problems. Helpcomes when the focus person, his or herallies, and the people who provide assis-tance recognize their interdependence

as a source for creative problem solving.Help comes as difficulties give peoplethe occasion to live up to their trust inone another.

Quests into shared space usually passthrough managed space or privatespace, but don't stop when services im-prove or customers are satisfied. Travel-ers in shared space search for under-standing of the gifts a person can con-tribute to the common good, and for op-portunities to make those contributions.This search attends to who a person be-comes beyond being a client, student orconsumer, and how a person wants touse their freedom. This sort of questmay sound a bit grand, but usually it issimple. A passion for nature leads to asemi-formal group that spends Saturdaymornings cleaning up a polluted creek.Concern for homeless people leads toweek after week of volunteer work in ashelter kitchen. A family heritage ofmaking church music leads to a place inthe choir. A gift of hospitality leads toparties that gather and expand groupsof friends. Hunger for justice leads to ajob organizing people with disabilities.Interest in local politics leads to hours ofenvelope stuffing. Some challenges on

ii

journeys in shared space arise in refiningunderstanding of the person's gifts, es-pecially when those gifts are buried byyears of low expectations and imposedpassivity. Help with these challenges willcome from imaginative listeners who arewilling to check their intuitions by invit-ing and supporting the focus person totry something new. Other challengescome in arranging the assistance a per-son needs to participate: getting rides,assuring that a person has the help nec-essary to be up and dressed on time, andmaking room in the schedule for aperson's memberships. Help here willcome in the form of service workers whoare willing to join in the quest. Stillother challenges come as people crossthe boundaries that form the invisiblebubbles that can contain even a personwho is present to community life. Helpin these negotiations will come frompeople whose sense of hospitality andappreciation of a person's contributiondraws them past unfamiliarity and awk-wardness into mutuality.

Any quest that overcomes our dismalhistory of segregation and control de-serves honor, regardless of the socialspace through which people journey.Not everyone who wants a person-cen-tered plan will want to undertake aquest in shared space. But, we believethat shared space offers the greatest op-portunity for person-centered planningthat encourages people with disabilitiesto break out of the invisible bubble thattoo often seems to separate them fromtheir communities. And the more readyeducation and human service providersbecome to join in building community,the more they will find people with dis-abilities who are ready to join them.

McKnight, J. (1995). The careless society: Community andits counterfeits. New York: Basic Books.

John O'Brien and Connie Lyle O'Brien are

founders of Responsive Systems Associates,

a human services consulting and training

company in Lithonia, Georgia. They can be

reached at 770/987-9785 or by e-mail at

72263-3724@compuserve.com.

9

10

The True Conductor of Tim's Life

by Karen Holt

"Hear ye, hear ye. Tim's Annual SacredCeremony is now called to order." Theinterdisciplinary team professionals areassembled around the conference tablewith pens and paper at hand. Someonespeaks: "All in favor, raise your hand.Good, it's unanimous. We've decided onTim's goals based on his deficits. He willlearn hygiene, dusting his dresser, tablesetting, and the art of cooking hard-boiled eggs. Will someone please bring

Tim was one of the first

individuals at New Directions

to participate in the person-

centered planning process.

him back to the room to sign the formsthat indicate his presence, participation,and approval of the program plan?"

Four years ago, New Directions, aresidential service provider in St. Paul,Minnesota, made the decision to shiftaway from such methods of planningand services and toward an approachgrounded in person-centered planningprocesses. Individuals with developmen-tal disabilities are now the conductors oftheir lives, with the service providersperforming as their orchestra, assistingthem to live a life of their own choosing.

As adopted by New Directions, theperson-centered planning process be-gins with the formation of a QualityCircle of support. Individuals selectthose with whom they feel close andwho are motivated and committed tosupporting the changes they desire intheir lives. Helping individuals identifytheir hopes, dreams, strengths, andgifts, along with what and who is impor-tant to them, becomes the starting pointfor discovery. Gathering this informa-

tion initially takes place during meetingsover the course of two days, three hoursper day. This is an energizing and emo-tional process in which the individualand group members share informationthat may have been unknown. There isfrequently laughter and tears as theymove toward a plan of action to makethe individual's life vision a reality.

Tim was one of the first individualsat New Directions to participate in theperson-centered planning process. Un-der the traditional system of planning,he wasn't very involved in decision mak-ing. Discussions frequently focused onhis challenging behavior at home andwork and how it could be "fixed" withprogramming. He became very good atnodding his head in agreement to thingshe may not have truly understood.

His lifestyle at the time consisted pri-marily of sleeping as much as he could.He became angry if awakened for mealsor activities. His friends were primarilyhis housemates and a few coworkers. Hespent much of his workday sitting downon the job at a local fast food establish-ment because he was so tired. He wasclose to losing the job because of angryoutbursts toward others.

It was decided that a person-centeredplanning approach would be used to ad-dress Tim's needs and desires. He sentout invitations to his county case man-ager, specific residential and day pro-gram staff, and his parents asking themto be part of his Quality Circle and toparticipate in his first person-centeredplanning gathering. At the gathering,Tim showed everyone present some ofhis most wonderful gifts and talents ashe became a quick-change artist and puton different costumes that accentuatedhis various interests. It was discoveredthat Tim's interests had to be exploredin a creative and energized way. TheQuality Circle, with Tim in charge, wentto work brainstorming.

One of Tim's interests was All-StarWrestling. A Circle member knew of a

1 2

gym that was run by an all-star wrestler,and so plans were made to introduceTim to the wrestler and assist him withbecoming a member of the gym. At-tending the gym two days a week is nowa regular part of his routine.

Tim also expressed an interest indressing up in a Santa suit and enter-taining others with his hearty "ho-ho-ho." Again, brainstorming proved fruit-ful; Tim was introduced to the SalvationArmy and a volunteer Santa opportu-nity arranged. Every December sinceTim has put on his Santa suit and deliv-ered hot cocoa to bell ringers around thecity. He also delivers Christmas cards inhis Santa suit to people in a nursinghome. Through this, he has developed afriendship with a woman who lives inthe nursing home; he visits her regu-larly, goes out to eat with her, and occa-sionally entertains her at his home. Sheis now a member of his Quality Circle.

Tim also has been connected to thelocal Jaycees chapter, attending monthlymeetings and participating in volunteeractivities. He is a welcome face at Jayceessocial events, and it has become an an-nual affair for the Jaycees to celebrateTim's birthday by bringing beer andcake to his home.

Because Tim's enjoyment of life andenergy level have increased, his workperformance and attitude have shifteddramatically. He recently was promotedas head of the crew at his job. This andother wonderful things that are going onin Tim's life didn't happen overnight.There has been an ongoing process tobring the Quality Circle together as hisdreams and plans have been realized orchanged. The Quality Circle continues tobrainstorm how to improve his life inways he desires. Tim is now the facilita-tor of his Quality Circle gatherings, andthe true conductor of his life.

Karen Holt is a Social Worker with New

Directions, St. Paul, Minnesota. She maybe reached at 651/488-039Z

A New Way of Planning for Michael

by Joann Sorem

It was not easy to "see with new eyes"what life could mean for my sonMichael. As his 36th birthday ap-proached, I was asked to attend severalmeetings in which Michael and somepeople who knew him were to brain-storm and talk about how he wanted toenrich and expand his life. During themeetings we shared some of the storiesabout Michael and our struggle to getthe services and supports needed to livea normal lifestyle. Some of the memo-ries were long forgotten, and I left someof the meetings with headaches from re-visiting sensitive and intimate parts ofour lives. Michael and I both needed alot of support and encouragement to be-come so vulnerable again after years ofjust moving along the service deliverysystem with all of the rules and regula-tions. There is some safety and securityin doing and thinking the same old way.But, it was time to try something new.

Michael seemed isolated and pro-tected in his group home. We knew hewas social and liked people, but he hadlimited opportunities to be with familyand make new friends. How could theenvironment, staff, and family becomemore "Michael-friendly"? Identifyinghis preferences, wants, dreams, andneeds was the first step. Supporting himin fulfilling his wishes was the second.

Michael, who is non-verbal, let usknow the things he did and didn't likethrough his behavior, gestures, and ut-terances. We also gathered informationthrough observing him and talking withpeople who knew him best. Among hisidentified likes were friends, family, andmotorcycles.

As his birthday approached, we won-dered, in response to his desire to spendmore time with friends and family,"Why not invite some new friends andextra family to Michael's home for aparty with pizza and birthday cake?" So,Michael and his circle of support beganinviting people. A staff person fromMichael's work program suggested that

Michael (back) enjoys one of his loves - riding on motorcycles with "the guys."

her sister would probably like to meetMichael, and she attended. Invitingsome cousins who hadn't seen Michaelfor a long time, a neighbor, and his bar-ber of 15 years seemed like a good idea,too. Michael enjoyed the party andseemed to feel comfortable with thegathering. He even asked his staffperson's sister to sit by him at the tablewhen he had his birthday cake.

Easter followed Michael's birthday.His group home staff had been bringinghim to the church that our family at-tends as part of supporting him to makenew friends. Building on this, after Eas-ter services Michael had dinner at homewith family members that he didn'tknow very well. He also had the chanceto act on one of his other likes motor-cycles. He learned to ride (slowly) on theback of the same motorcycle that I hadrecently just learned to ride on. He likedthe freedom and independence that al-lowed him to ride with "the guys."

With limited speech and a higherthan average activity level, it has beenhard for Michael to make new friendsand share interests with others. So, hehas sent out a letter to new friends, ac-quaintances, and family members to tellthem more about himself and what helikes to do. He was surprised to receive

1 3

letters and pictures back - and nowkeeps them in a personal album.

Trying new social skills, improvingcommunication, having more opportu-nities to be with family and friends, andfinding the right medication have allchanged the quality of Michael's life. Hehas become more adventuresome andwilling to try new things. He also ex-presses much happiness and joy whenhe spends more time meeting friendsand being with family. And, he has hadmore experiences that other young menhis age have, especially social, cultural,sports, and leisure activities.

Continuing the process of person-centered planning takes time, commit-ment, energy, a facilitator, and well-trained staff. Good communication isessential on a regular and informal ba-sis. Support for Michael and those wholove him is also part of the process.Finding and adding to the supportgroup of friends, family, professionals,staff, and community members needs tobe ongoing. Person-centered planning isa "people process" bringing togetherpeople who care about Michael and arewilling to see him "with new eyes."

Joann Sorem lives in Bella Vista, Arkansas,and Michael lives in St. Paul, Minnesota.

11

12

Who Can Facilitate Person-Centered Planning?

by Jack Pearpoint and Marsha Forest

Can everyone facilitate person-centeredplanning processes? That is like asking ifeveryone can do brain surgery. Openingpeople's hearts and dreams is surgery onthe soul. It is delicate and difficult work,and must be honored with skill, compas-sion, and love. If you discover that theseare not your strengths, then find otherpeople who are skilled in doing this workand let them undertake it. We have seenmagic happen when person-centered

Opening people's hearts and

dreams is surgery on the soul. It

is delicate work and must be

honored with compassion,

with skill, and with love.

planning tools are used with skill, love,imagination, and humility.

For us, the heart of person-centeredplanning is, "Facilitator know thyself."Here are a few guiding questions forfacilitators to ask themselves:

Have you experienced being the focusof a MAP, PATH or other person-centered planning tool?

Do you have a mentor, guide, thera-pist, or circle you see regularly tocheck out your own life?

Do you read and study continuouslyin group dynamics, organizationalchange, healing, health, etc? Do youread outside your own field to in-crease your scope?

Do you think you have been fullytrained and certified by taking aworkshop or 3-day course? If so, re-turn to # 1 above (have you been afocus person?).

Do you alphabetize processes likePCP? Please don't. The initializedversion trivializes a deep issue. Wedon't want people reporting that theywere PCP'd upon.

Do you work alone or do you havepartners with whom to share experi-ences and reflect on your learning?

Good facilitators struggle to balancemany seemingly paradoxical issues. Thefollowing are four we've experienced:

Learning and Unlearning: Facilitatorsmust constantly learn new things,and unlearn some old ones. The fa-cilitator is a servant to both the pro-cess and the person, holding emptycontainers and drawing the contentout of the person and his or herfriends, family, and colleagues. Theplan belongs to the person, not theorganization or the facilitator. Wemust learn to hand over power andunlearn our "control" habits.

Knowledge and Self Knowledge: Onemust have a wide knowledge baseand a strong, knowing sense of self.As a facilitator one must give up pre-conceived notions of what is good orbad, what is possible or impossible.This requires knowing ourselvesour strengths and limits so we candistinguish between our personalpreferences and those of the personwe are serving. Dangerous facilitatorsoverride another's words and imageswith their own interpretations.

Professional and Personal Integrity:There is no separation between per-sonal and professional integrity. In-tegrity is integrity. Separate ethicsharms people. To minimize this risk,our ethics rule is that facilitatorsmust practice these tools on theirown lives before using them on oth-ers. This makes us more respectfuland less dangerous.

1 4

Self-ROection and Review: We mustconstantly reflect and review whatand how we are doing with thesetools. Just because we have learnedthe process does not mean we are do-ing our best. There is always room forimprovement. Maybe we are over-tired, or perhaps due to personalpreferences we are not the rightpeople to undertake a particularMAP. We must listen to these "itchy"patches and pay attention.

We feel it is unfair at best and ob-scene at worst to ask others to dreamand be vulnerable while we remain aloof

hiding behind the mask of so-calledprofessionalism. A brilliant professionalis one who has explored his or her ownsoul and knows the boundaries neces-sary to allow others to share their painand joy without intruding into or invad-ing their space. We tell people, "Bewareof facilitators who advise you what todo, but whose own lives are a giganticmess and can't ask for help themselves."

There are times when doing "noth-ing" is a discerning decision. Better to behumble and nervous about your capaci-ties than to leap into unknown watersand do irreparable damage. This is notan excuse to never take a risk, but rathera reason to be cautious with other'slives. Respect them. There are times tostop a process mid-stream. Do no harm!Take risks, but choose the time, theplace, and a tool that give an excellentchance of success. And know your ownlimitations. That is all any of us can do.

Jack Pearpoint and Marsha Forest are thefounders of the Centre for Integrated Edu-cation and Inclusion Press International,Toronto, Ontario, Canada. Forfurtherinformation on MAPS and PATH, as wellas information about facilitator training,contact them at 416/658-5363 or by e-mailat 74670.1124@Compuserve.com. Or viewthe Inclusion Press website at http://inclusion.corn.

Joel Hollands facilitating Marijo McBride's person-centered plan (PATH).

Profile of a Facilitator: Joel Hollands

Joel Hollands and I first met almost ayear ago at a Creative Facilitator coursesponsored by the Centre for IntegratedEducation in Toronto, Canada. Thecourse was designed to build strengthsand capacities in person-centered plan-ning facilitators. Joel was my PATH(Planning Alternative Tomorrows withHope)*facilitator. This was a milestonefor us and the PATH process to have a13-year-old young man facilitate.

At first I was concerned. I knew thatperson-centered planning should not betaken lightly. When done right, it lookseffortless. When done wrong, it can havefar-reaching, detrimental consequencesfor focus persons, their support net-works, person-centered planning, andbeyond. What I came to realize as Joelfacilitated my PATH was that process fa-cilitation is an art that can transcend ageas long as the facilitator demonstratesmature judgement and behavior, isgrounded in the philosophy and corevalues of person-centered planning,honors the uniqueness of the focus per-son, is a good listener, elicits the focus

person's dreams and ideas rather thantheir own, is flexible and creative, andcreates a welcoming environment. Joelpossesses all these traits.

Joel has been involved with the PATHprocess since he had his first PATH donein 1996. In his own words, "The topic ofmy first PATH was for me to create myperfect school year. I wasn't having avery good year at school. In my dreamschool, I remember saying that kids ranto school because they were so happy togo. The school wasn't cramped andteachers put themselves in the students'shoes. The NOW part of my PATH wasthat teachers didn't care about me andwanted to leave school as soon as pos-sible just like the students. My PATHhelped me realize it would be a goodidea to change schools and try some-thing new. I didn't do all the little steps Isaid I would do, but I did the big stepand I moved to a new school where I amvery happy. I was chosen to do the vale-dictorian address for the school."

Joel asked for the opportunity to dographic facilitation for another's PATH

1 5

at the Centre's Inclusion Summer Insti-tute. A graphic facilitator captures thefocus person's dreams, values, and ac-tion plan in pictures and words on largesheets of poster paper. Joel recalls, "I de-cided I really liked to do graphic facilita-tion and asked to do some graphics withan adult partner. I was really nervous asI wanted to make sure to get down whatthe focus person wanted and I didn'twant to mess it up. I wanted it to be per-fect. I was very cautious and I learnedthat was good as I got down the focusperson's images and thoughts, not mine.After being the graphic facilitator, I de-cided I wanted to learn process facilita-tion by participating in a Creative Facili-tator course. I did my first process facili-tation as a team member with anotherfacilitator. The PATH finder was MarijoMcBride. I had to make her focus on herpath and had to get down everything shereally wanted to say.

In facilitating my PATH, Joel encour-aged me to unlock possibilities in my life.and develop a plan to make my dreams areality. The PATH, through the strengthof effective facilitation, has given mepermission to dream, plan, realizedreams, and dream some more. I willcontinue on my evolving journeythrough the support of person-centeredplanning, my circle of support, and ef-fective facilitators like Joel.

Joel loved doing PATH and says "I'dlike to try MAPS, but I know that thefirst rule of thumb is that you can't do itto anyone else till it's been done to youbecause you can't understand what an-other person is going through unlessyou've done it yourself." He took thenext step toward becoming a MAPS fa-cilitator this past summer when he hadhis MAP done.

PATH is a person-centered planning tool developedby Jack Pearpoint, John O'Brien and Marsha Forest. It ispublished by Inclusion Press in Toronto, Ontario,Canada.

Contributed by Marijo McBride and Joel

Hollands.

13

14

Circles of Friends in Planning with Studentsby Gerv Leyden, Colin Newton and Derek Wilson

One of the challenges in beginning per-son-centered planning with studentswho have disabilities comes from theirhistory of social isolation. Even inschools where students with and with-out disabilities learn together, there of-ten still remains a social barrier thatleaves students with disabilities withoutclose friends and companions amongtheir school mates. When introducingperson-centered planning with such stu-dents, there is the question of who willparticipate in their planning process.Often, it is family members and schoolstaff. But, that leaves a gap in the area ofpeer support and involvement, and lim-its the resources available to enhance astudent's social inclusion. How can thatgap be closed? One way is through usinga Circle of Friends.

A Circle of Friends is a group ofpeople, including age-peers, who re-spond to a request for involvement inthe life of an individual who needs thefriendship and participation of others.Participants in a Circle may volunteer tobe part of the planning and supportteam for an individual undertaking aperson-centered planning process. Theymay also be a network of people willingto befriend a person, get to know them,spend time with and care about them,and share activities and interests.

To create a Circle of Friends in prepa-ration for person-centered planning,preliminary work needs to take place.In our case, we utilized the Circle ofSupport building activities described inThe Inclusion Papers (Pearpoint, Forest &Snow, 1993). The starting point is thesetting forth to a selected group of stu-dents the need for a Circle, a discussionusually initiated by a teacher, educa-tional psychologist or school counselor.Then, those who volunteer begin accom-panying the individual on a journey tocreate the life he or she desires.

The following list of frequently askedquestions about Circles of Friends sumsup the excitement and anxiety of teach-

ers, parents, and educational psycholo-gists who have attended our workshopson inclusion, and who have little experi-ence of person-centered planning forvulnerable students. We offer them herein hope that they may answer some ofthe questions in the minds of thosereading this article. One note of caution:The answers are our answers, not "TheAnswers" or even your answers. We can-not know what will work best in yourcontext. As long as one eye is kept fixedon the deeper values and principles un-derlying person-centered planning, youcan be creative in finding your own waysto build relationships and community.

What if no students respond to theinvitation to be part of the focusstudent's Circle?

This is probably the most frequently-voiced anxiety from anyone contemplat-ing a Circle. Often, this fear is fueled byadults who may have experienced con-siderable frustration when trying tochange the student's behavior or placateother pupils who have been made angryor fearful by the focus student. Yet ourexperience is that this fear is never real-ized if the facilitator has recruited theright people and asked the key questionsfrom the heart.

Sometimes the pre-Circle session willbe used by individual pupils to expresstheir anger and frustration with the fo-cus student. As long as the facilitatorprovides a safe boundary to containthese strong feelings and does not allowthe session to become solely about com-plaining, it is invariably helpful. Themessage is that this is real, people arebeing listened to, and the class is nowable to move on and look at constructiveways to help the focus person.

If, at the stage of enlisting support,the process appears sluggish, it is oftenhelpful to put the recruitment issue backto the group by asking, "Is there anyonewho people think would be a helpful

16

member of the Circle and who hasn't yetcome forward? Groups always havesuggestions and they are usually right!

can think of at least seven studentsin my class who would benefit fromthis approach. Should I run a Circlefor each of them?

We doubt whether this would be man-ageable for one facilitator and we recom-mend that a Circle has no more than onefocus person within it. Perhaps thisquestion is really about unmet socialand personal needs among students inthe class or school as a whole. If so, oneway forward is to ask for help from thestudents themselves. All of them! If aCircle already exists in the school, itsmembers may provide useful sugges-tions of where and how to start.

What if disclosures are made duringthe Circle meetings?

It is important when briefing a newCircle to ensure that all members realizethat they may be told something whichthey cannot keep secret or confidential.Students will need to be reminded thatif this occurs they should speak to anadult such as the teacher facilitating theCircle. One of the strengths of Circles isthat pupils do learn to trust one another.In our experience, secrets and privatesufferings have been safely shared andappropriately contained in most Circles.

Can Circles co-opt members?

Stronger, older peers, siblings or evenadults may usefully be co-opted into theCircle and strengthen its work. Diversitybrings strength and this is at the root ofCircle work. The guiding rule is that the"right people" who can make a differ-ence to the individual need to be pre-sent. Sometimes the right person is theone giving the Circle most concerns be-cause of his or her antagonism towards

the focus student. A constructive way ofviewing this antagonism is to say thatthis person also has an unmet need tobelong. An invitation to be part of theCircle is one step towards meeting thisneed and dealing with the antagonism.

What is the best way to choose theCircle members?

In our workshops, we generally discussthe pros and cons of a number of waysof selecting members, including selec-tion by students, facilitator and stu-dents, or by focus student. If using selec-tion by students, the group nominatesthose whom they feel are best suited tosupport the focus young person. Theycan be prompted to consider shared in-terests, hobbies or other strengths of fel-low classmates (e.g. listening skills, per-sonality, communication skills, popular-ity and "street cred"). When using selec-tion by facilitator and students, the fa-cilitator chooses two students on the ba-sis of their contributions to the discus-sion, two more members on the basis oftheir knowledge of the group, and thestudents choose the rest. This is themethod we prefer, but it may not beright for you. A third option is for the fo-cus student to select from volunteers.The focus student is given the names ofvolunteers and asked to suggest whowould be most helpful, supportive andusefully challenging within their Circle.This provides maximum control for thefocus person and strengthens his or herownership of the process.

How long do students need toremain members of the Circle?

We have already stressed the need forthe facilitator to provide safe personalboundaries for Circle members. Timeboundaries are equally important and itcan be helpful to let prospective Circlemembers know that a lifelong commit-ment is not expected! In our experience,a school term is a useful time span. Fol-lowing that period, Circle members willhave the choice of continuing for a fur-ther period or of opting out for a spell.

In practice, we find that opting out israre in successful Circles. However Circlemembers, particularly at the secondaryor high school level, find it reassuring toknow they have a choice.

Can the Circle meet without thefocus student present?

Meeting without the focus studentpresent is not an option that has any le-gitimate place in Circles work. TheCircle is built around the focus personwho has the final say on decisions andthe power to influence events. This isunlikely if he or she is not present. Inpractice, much depends on the skills ofthe facilitator and his or her ability toenable difficult issues to be aired con-structively. When facilitators feel theneed to convene a Circle meeting with-out the focus person present, it generallymeans that things appear to be goingbadly and the efforts of members are in-effective. It may be helpful to provide achance for members to offload frustra-tions if the alternative is the demise ofthe Circle. But frequent Circle meetingswithout the focus student indicate thatyou have strayed way off track and areno longer facilitating a "Circle ofFriends."

What if 7

The potential range of questions is end-less and we need to remember that fullcommunity participation is seldomachieved through "quick fix" values ortools. The facilitator needs to plan forcoping with periods of disappointmentand crisis as well as the fulfillment ofseeing the growth of positive social con-nections and friendships for the focusperson. If there is an answer to the un-expected or unexpectedly prolonged cri-sis, it is that sometimes we have no ideawhat the way forward is. This answer isa counsel against the culture of profes-sionalism that implies that every situa-tion is covered, every question has ananswer if only we knew to whom weshould refer. To be able to say with hon-esty that you don't know what to do next

17

is often quite therapeutic. It passes thepower back to the person seeking help.

"An ounce of prevention is worth apound of cure," so it makes sense for in-dividuals within Circles to avoid vulner-able situations. Escorting a vulnerablestudent home, visiting at home, playingin an isolated area and so forth may berisky and it can be safer to 'buddy-up' orarrange back-up.

Similarly, if facilitators are to sustainCircles through times of crisis, they alsoneed to draw on their personal and pro-fessional support networks. When run-ning a Circle in a complex organizationsuch as a school, it is wise in advance tochoose as back-up someone with rel-evant consultancy and group leadershipskills. This might be a trusted colleague,educational psychologist, advisoryteacher, social worker or representativeof a voluntary body. Remember, "Neverdive alone!"

Creating Circles of Friends inevitablyinvolves risks. Human relationships in-volve risks. More and more of us areprepared to be innovative and take thoserisks in order to bring students with de-velopmental disabilities from isolationinto participation. The risks of doingnothing or following tired professionalroutines seem to us far greater and un-justifiable.

References:

Pearpoint, J., Forest, M. and Snow, J. (1993). The inclu-sion papers. Toronto: Inclusion Press.

Gerv Leyden is a tutor at the University ofNottingham, Nottingham, UnitedKingdom, where he teaches in the post-graduate training course for educationalpsychologists. Colin Newton is PrincipalEducational Psychologist for the City ofNottingham Community EducationalPsychology Service. Derek Wilson is SeniorEducational Psychologistfor the City ofNottingham Community EducationalPsychology Service. They may be reached

through Gerv at 44-0-115-951-5324 (fax)or by e-mail at gl@psychologyNottingham.ac.uk.

15

1 6

Becoming Dream Catchers: Person-Centered

Planning and Youth With Severe Disabilitiesby Anne Malatchi

Many of us are familiar with the NativeAmerican legends surrounding dreamcatchers. The Sioux and Ojibway Indi-ans, along with many other tribes, con-sider the dream catcher the web of life,and it is hung above the bed or in thehome to sift the dreams of those nearby.Good dreams are captured and stay witha person: bad dreams escape throughthe hole in the web's center and leavethe person's life. Our challenge, as pro-fessionals who care about and supportyouth with dual sensory impairmentsand severe disabilities, is to becomedream catchers. We can do this throughusing person-centered planning as theprocess to journey with youth, theirfamilies, and friends on a voyage of dis-covery that involves learning about theirdreams and nightmares, really listeningto their choices, and guiding them to-ward a life of their choosing.

At Together We Can we work withschools to help them move toward usingperson-centered planning in the IEPprocess with youth who have dual sen-sory impairments and severe disabili-ties. In the past, our educational systemappeared to be designed to support asystem-centered approach, not a person-centered approach. Schools became la-bel driven and label crazy, and this wasespecially evident during IEP meetings.Often, during the meetings studentswere referred to by their labels, and itwas the labels that drove decisions, plan-ning, and placement not the indi-vidual. This is the opposite of person-centered planning.

In our work, we are often asked howwe can be person-centered if the personwe are educating cannot see, hear, orcommunicate with us? It is possible, butwe should begin early. Waiting untiltransition time and the age of 14 orolder is often too late to begin listeningto young people's dreams and findingout about their journeys toward lives of

their choosing. Consequently, we believethat person-centered planning shouldbe used in developing IEPs beginning inpre-school and elementary school. Thisrequires changing the belief that theeducator is the only expert and in con-trol of all educational decisions, to a be-lief in a collaborative, transdisciplinaryteam approach to education and deci-sion making. A collaboratively devel-oped IEP can be the first step towardshifting from a system-centered ap-proach to a person-centered approach ineducating students with dual sensoryimpairments and severe disabilities.

One student with whom we've seenperson-centered planning work as adream catching process is Susan*. Susanis 17, very social, has a job, and enjoyshanging out with friends. She is alsoDeafBlind and communicates using signlanguage. However, due to her vision im-pairment, those individuals signing toher must be within her vision field. Ad-ditionally, her slow processing time andweak fine-motor skills impact her abilityto understand and respond.

For many years, Susan's IEP team hadfocused on her labels: DeafBlind and Se-vere Disabilities. Programming, sup-ports, and placement had been deter-mined more by the "severe disabilities"label than the combined loss of visionand hearing. Her parents have educatedthemselves regarding DeafBlindness andSusan's other disabilities, and havespent many hours educating others onthe IEP team about her strengths andweaknesses. The team is now beginningto understand the importance of listen-ing to Susan and her family, collaborat-ing on decision-making, and seeing herunique strengths and capacities.

Susan wants desperately to havefriends with whom she can communi-cate, to work in a restaurant, to be safe,and to know what is going on aroundher. Her IEP team has taken a major step

forward in acknowledging her needs anddesires and agreeing to a type of supportsystem that is unfamiliar to them. Thisschool year she will work on transitionskills in the community, at her highschool, and at her job site with the sup-port of an interpreter/tutor. The inter-preter/tutor much different than a tra-ditional interpreter will provide theeyes and ears" that Susan needs in or-

der to access her environment. With thisone-to-one support, she will be able tobe aware of what is happening aroundher and move toward a life of meaning-ful participation in her community.

Creating collaborative IEP's is onlythe beginning a beginning of a lifetimejourney for individuals with dual sen-sory impairments and severe disabilitiesthat must involve the principles of a per-son-centered education. It is a journeythat along the way will force those thatsupport, guide, and educate, to look atthemselves first in order to seek newways to listen, instead of always seekingways to change the students. It is a jour-ney that focuses on dreams and visionsfor the future and on what needs to betaught in order to get there. Making acommitment to becoming a dreamcatcher is a necessary precursor to thiskind of person-centered planning andeducational process.

Pseudonym.

Anne Malatchi is Director of Together WeCan: The Virginia Project for the Integra-tion of Children With Dual SensoryImpairments, and Director of FuturesPlanning: Helping Communities WelcomePeople with Disabilities. Both projects areat the Virginia Institute for DevelopmentalDisabilities, Virginia CommonwealthUniversity, Richmond. She may be reachedat 804/828-8593 or by e-mail at amalatch@saturn.vcu.edu.

18

A Plan is Not an Outcome

by Michael W Smull

Person-centered planning is our labelfor learning how people want to livenow, what is important to them in ev-eryday life, and how they might want tolive in the future. But, a plan is not anoutcome. The only reason to do theplanning is to help people move towardthe life that they want, and person-cen-tered planning is only the first part ofthat process. Whether anyone can "get"the life described is also determined bytheir access to resources and the "rules"for using those resources.

Implementing plans is about sup-porting a journey a journey that in-cludes recognition that what we wantchanges over time, that choices oftenhave to be made about which of ourcompeting desires to satisfy, and thatmany of us want more than our re-sources can sustain. We begin by listen-ing and trying to understand what wehear. We record what we learn in a plan.As we act on what we have learned, wesee how it works. And then begin againby listening and understanding.

Moving Beyond Present Reality

For most youth and adults with disabili-ties who receive services, the present re-ality is a world of programs. Most of thecurrent resources are fully committed tobuy capacity, to buy "slots." There arepeople living in group homes and goingto segregated day services who have toldus that they hate their roommate andare bored during the day. There are highschool students attending educationalprograms that they find meaningless be-cause they don't prepare them for the fu-ture they desire for themselves. Wherepeople want change, planning withoutreal action simply creates cynicism foreveryone. One of the traps that this cre-ates for planning is that what is availablenow shapes what is asked for.

In trying to not be limited by whatexists we have learned that the kinds ofquestions that you ask and the order in

which you ask them make a difference inthe outcome. Ask about what is impor-tant before asking where it could hap-pen. Learn what is important in every-day life and then look at all the differentways that it could happen. We now haveenough "best practice", enough "pilots",so that what people have in mind islikely to already exist. It may not be nextdoor, it may have been developed in an-other country, but it is likely to exist.Only after people have explored what ispossible should they look at what isavailable now. In locations where thatwhich someone wants is not offered, thenext question "How do we develop ithere?" can be answered knowing thatit has been done elsewhere and thatthere are resources from which to learn.

Asking for Input

Clearly it is easiest to create new sup-ports with people who are just cominginto the community system, people whoare leaving their family homes or areleaving institutions. When we plan withthose people who are already receivingservices we are facing a number of newchallenges. One of these is that peopleare not used to looking outside of theircurrent ways of doing things. Plans thatstarted with what was wrong with some-one were typically part of a professionalritual where "good paper" counted morethan good lives. These plans were writ-ten with those who spent the least timewith the person having the greatest in-put. They were read only by those whowrote them (and those who inspect),and were not used in everyday life. Thispart of professional culture continuesand interferes with implementing per-son-centered plans. To change the cul-ture we have been recommending thatthose who manage or visit ask somesimple questions after the person-centered plans are written. Ask those be-ing supported and those providing theday-to-day supports: How is the plan

amull, continued on page 27)

1 9

Taking a New View ...

The hierarchical, competitive culture in

which most of us have grown up dismissed

people with disabilities as Ideficient"or tle-

fective."In that world, an important ques-

tion was: What is wrong with that person?

Enormous effort obviously has gone

into answering that question about people

with disabilities.What we have slowly come

to recognize is that this question, ultimately,

can be applied to all of us. Inevitably, in

such a culture there is something "wrong"

with everyone, so if we really want a society

for us all, we need to turn the question from

"What is wrong with you so that you can't

be a full member of society?"to ask instead,

"How have we collectively built a society

that keeps you out? What do you have to

bring?What has your life taught you and

what can we learn from you?':...

People with disabilities are in the early

stages of a liberation movement they are

beginning to recognize that their lowly sta-

tus in society is due not to their disabilities

but to an unjust society. Until this aware-

ness gains wider currency, however, most

people all kinds will see the status quo

of oppression as"right."When people la-

beled retarded are seen as defective, it

makes sense to assume that they cannot be

included fully or valued equally in society.

Custodial and paternalistic attitudes are

seen as protecting the vulnerable rather

than stifling untapped and unexpected

abilities.

Excerpted with permission from Lovett, H. (1996).Learning to listen: Positive approaches and peoplewith difficult behavior. Baltimore: Paul H. BrookesPublishing. Pages 7 & 10.

17

18

Creating Person-Centered Organizationsby Ron Spoelstra

Community presence. Community par-ticipation. Competence. Respect. Choice.These five concepts form the basis of anystrong person-centered planning pro-cess. We are well on our way to offeringtruly person-centered planning to thosewe serve when these five concepts charac-terize our organization's culture. Let'stake a closer look at the five originallyarticulated by John O'Brien (1991) andtheir roles within organizations servingpeople with disabilities.

Community Presence

Person-centered planning usually ad-dresses the "presence in community" of aperson with a disability. It includes cre-ation of a MAP or other personal profilethat looks at where the person is sociallyconnected and disconnected. The focus issimilar when an organization wishes tobecome more person-centered in its ap-proach to service provision. A first step isfor individuals within the organization todetermine how well-established it is inthe community by surveying what its"presence" looks like locally, statewide,and/or nationally. That presence oftenreflects the value that leadership placeson the bridge-builders in the organiza-tion. If the connections are thin, there isa need to determine why. Making sure anorganization has a community presenceis the starting point for assisting indi-viduals to strengthen or develop theirpersonal community presence.

Community Participation

Being present in a community is a start,but an organization must also be a com-munity participant. Just as the individu-als whom it serves can become active andparticipating members in a variety ofways for example, by joining the ElksClub, poetry society or begonia club soalso can an organization participate inits community by supporting localgroups. For example, employees can vol-

unteer to staff the Alzheimer's Associa-tion fundraiser, or offer technical assis-tance to the local transportation board,or provide respite services to a sisteragency. In doing this, employees canmodel the community participation theyseek to support for people they serve.

Competence

Person-centered planning has gainedenormous recognition for focusing onindividual capacities (remember, cup-acity half full or half empty?). Simi-larly, an organization may create, at allits levels, an ethic of rewarding employeecapacities. For example, managementmay look at the difficult issues of staffturnover and retention, making improve-ments in the quality of working condi-tions that communicate the valuing ofemployees. Or they may step "out of thebox" when it is time to make a majorchange in response to employee sugges-tions and needs, recognizing that the em-ployees know best what works for them.By supporting and rewarding internalcompetence, individuals within organi-zations set the stage to more readily seecompetence in the people they serve.

Respect

During person-centered planning, indi-viduals are asked to describe a desirablefuture for themselves. Respecting theindividual's response is critical at thisjuncture, and dictates listening and be-ing responsive to their future as theyhave described it. Likewise, an organiza-tion extends respect when its leadershipasks for input about its future fromstakeholders, including those whom itserves, its staff, advisory boards, andcommunity members. When organiza-tional leadership asks stakeholders toevaluate its activities, policies, and pri-orities, and acts on their responses, thisindicates respect for those whose livesare affected by the organization. It also

supports a culture of listening to whatpeople want for their own lives, and sup-porting them in realizing their visions.

Choice

Person-centered planning encouragesindividuals to choose their life path bothshort- and long-term. Leaders withinorganizations also make choices aboutwhat the organization stands for andhow it will express its values and priori-ties. For example, an organization'sboard of directors may decide that theycan no longer support large residentialfacilities for people with disabilities, andseek alternatives. Or school district ad-ministrators may decide to make socialand educational inclusion in the districta priority. When people within organi-zations choose to look at the needs ofthe organization's constituents from anew perspective, from a person-centeredviewpoint, they are on the way to trans-forming the organization into one thatwill ensure that the people it supportsare living lives that are being envisionedby and for themselves.

Many organizations are coming tounderstand that using person-centeredplanning requires far more than practic-ing certain techniques with individuals.In many ways, person-centeredness is adirect result of the way in which thoseworking within organizations choose toview themselves and those for whomthey advocate. Ensuring that the fiveconcepts described above are integralparts of the organization is a good startin offering person-centered services.

O'Brien, J. (1991). Framework for accomplishment: Aworkshop for people developing better services. Lithonia,GA: Responsive Systems Associates.

Ron Spoelstra is a Project Coordinator withthe Institute on Community Integration,University of Minnesota, Minneapolis. Hemay be reached at 612/624-5042.or by e-mail at spoel002@tc.umn.edu.

20

Living Person-Centered Planningin the Village of Kumbayahby Shina Asante Ahad and Bahiya Cabral Asante

Eight years ago, after almost a decade ofintense community organizing aroundissues as diverse as keeping a neighbor-hood fire station open and developingyouth leadership, members of New Afri-can Voices Affiance (NAVA) evaluated ourwork and its impact. Our vision was a so-

In a village, children have the

combined care of many people,

extended :family" members to

whom they can go. Person-

centered planning works the

same way in the village.

ciety where each individual could thrive,where human relationships were basedon love and respect, and where both po-litical and economic democracy were theorder of the day. However, in lookingback over years of work, we recognizedthat we had lost many people along theway. Their real life needs took them awayfrom working to improve their block,neighborhood, city, and society. Manytimes, economic needs did not allowthem the time and energy for communityorganizing. People also had pressing fam-ily needs, including the desire to actuallyspend time with their loved ones everyonce in awhile, as well as the overwhelm-ing needs of children growing up in aworld where temptations are many. Inthe words of the co-founder of NAVA,Shafik Asante, "People are too busystruggling for their economic survival tothink about their human liberation."

Out of this evaluation a new conceptwas born. Actually, it's probably not new

as there is "nothing new under the sun."Yet, it is definitely something we've got-ten away from in the U.S. That is theconcept of community building or whatwe in the Village of Kumbayah callvillaging As African people, we once be-lieved in the village concept raising ourchildren in an atmosphere of sharedlove, support, and discipline. In a vil-lage, children have the combined care ofmany people, extended "family" mem-bers to whom they can go. Person-cen-tered planning works the same way inthe village. The person in need of sup-port receives it from an entire group ofpeople who value that person and havean emotional investment in his or hergrowth and success. When it has beendetermined that someone needs extrasupport, it is customary for them, theirparent/guardian or other key person(s)to present the situation to the gatheredvillagers. Once the situation has beenlaid out, a committee may be chosen bythe person or people may volunteer.That committee will look into the vari-ous options that are available for thatparticular challenge. Then they will askthe person who is being supported whatgoals are expected. In this process, weuse person-centered planning tools in-cluding MAPS, PATH, and SolutionCircles. When we have worked with avillager in resolving a problem or plot-ting a course to a goal, we then have pe-riodic check-ins to make sure that thingsare moving according to plan and toidentify what modifications or addi-tional supports, if any, are needed.

Our most complex experience withperson-centered planning occurredwhen Shafik Asante was hospitalized in1997. We often refer to Shafik as theheart of the Village of Kumbayah. Hecombatted cancer for 20 years but stillwas able to model for us what villagingwas all about. In 1994, Shafik did a MAPthat was invaluable to us in determining

21

the kind of care he wanted to receive.We knew that it was necessary to pro-vide round-the-clock support, so wecame together and drew up a plan. Theplan insured that he was never at thehospital alone, that all hospital care thathe received was monitored, and that de-spite his condition, he was alwaystreated with dignity and respect. Thiswas especially critical towards the endof his hospitalization as he was not ableto insist upon those things for himself.For example, Shafik always required thatdoctors treat him as a whole personspeak directly to him, ask him ques-tions, let him know what they were do-ing. We insisted that these practices con-tinue when he was unable to speak. Wemade sure that his favorite music wasplayed, that his symbols that he valuedwere placed around the room, that, infact, the environment in his room was asclose to home as possible. The require-ments of his care were shared by all vil-lagers. At the same time this providedneeded support to his family and to ev-eryone in the village during this espe-cially painful experience. It was neces-sary for us to pull together, and we did.

Shafik transitioned on September 5,1997. Supporting him was the first ma-jor test of person-centered planning inour village. We had utilized it before butnever in a situation that required somuch of all of us or where the personwas not able to directly communicatehis wishes. We struggled to insure thatShafik's needs, as he saw them, were putfirst, and for us that is the heart of per-son-centered planning.

Shina Asante Ahad and Bahiya CabralAsante are members of New African VoicesAlliance (Village of Kumbayah), Phila-delphia, Pennsylvania. They may bereached at 215/241-7179.

19

20

Planning for Systems Change in Alaskaby Karen Ward, Gordon Ward, Brenda Ross, and Robyn Rehmann

In 1997, a group of people in Alaska em-barked on a commitment to effect sys-tems change through person-centeredplanning. The Alaska DevelopmentalDisabilities Planning Council, the Cen-ter for Human Development at the Uni-versity of Alaska, the Anchorage SchoolDistrict, the Alaska Department of Edu-cation, and the Alaska Parent TrainingCenter formed a consortium to givepeople with disabilities power to deter-mine their own futures. The route to thisgoal was to increase knowledge, under-

In 199Z a group of people

in Alaska embarked on

a commitment to effect

systems change through

person-centered planning.

standing, and use of person-centeredplanning throughout Alaska's servicedelivery systems (e.g., schools, commu-nity services). Our strategy was to use a"train-the-trainer" approach to build ef-fective teams and partnerships acrossthe state through person-centered plan-ning at all levels of the systems.

Working with Jack Pearpoint andMarsha Forest, we began training teamsin August, 1997. Twelve teams were re-cruited from school districts, commu-nity agencies, and parent groups state-wide. Our intention was to bring aboutsystems change by first changing prac-tices so they facilitated the inclusion ofall people. We wanted to train teams toincorporate person-centered planning atthe individual and school agency levels.By training teams, we hoped memberswould support each other to build inclu-sive schools and communities. We also

wanted to develop capacity within thestate to continue the momentum by de-veloping a cadre of trained facilitators totrain new teams, educate others, provideassistance with person-centered plans,and sustain relationships with peoplefrom outside Alaska to continually in-fuse other perspectives.

At this time, trainees are actually us-ing what they have learned as early as 12months after the initial training. Manyhave facilitated plans for individuals,families, and themselves. Some are us-ing person-centered strategies at an or-ganizational level to plan better servicedelivery. Some are incorporating facilita-tion techniques into other types of train-ing for families, teachers, and serviceproviders. And most importantly, all arecoming together with increased energyand enthusiasm that they can make adifference in people's lives. Many par-ticipants say that as a result of the train-ing they are more aware and more toler-ant, learning to be less judgmental, stay-ing focused on the "big picture" andwhat is important in the lives of the in-dividuals they serve, developing an in-clusive perspective, and not using sys-tem jargon. Overwhelmingly, partici-pants say their skills in listening, use ofvisual imaging, problem solving, com-munication, and overall facilitation havegreatly improved.

We have given people who are con-cerned about the hopes and dreams ofpeople with disabilities the tools andstrategies to better understand and fa-cilitate achievement of those hopes anddreams. There are some things we cando differently to further support thepeople we have trained. We can supportteams so they have time to think, reflect,and develop mindful plans; we cannotexpect teachers, parents, and commu-nity service providers to do mindfulwork within the context of doing morewith less time. We can pay better atten-tion to multicultural aspects. Alaska is arainbow of cultures, and each must be

respected and preserved. We need to en-sure that trainees have opportunities topractice facilitating person-centeredplans in a multicultural context. We canprovide more practice. Informal follow-up sessions to enable participants to gainmore practice, with opportunities to de-brief, seem warranted. And all partici-pants wanted more practice using graph-ics. There seems to be a mystique aroundthe artistic abilities required to portrayvisual images. Future training must com-municate that while graphics are impor-tant, artistic acumen is not.

What should we do right now? Thebasic message we've received is that moretraining is needed and should be mar-keted to a wider audience. The power ofperson-centered planning is not limitedto persons who experience developmen-tal or other disabilities we all benefit.To effect systems change, we need to en-sure that administrators, parents, and in-dividuals who experience disabilities aremore broadly represented and trained.

We think we are on the right track.Training is a process, not an event. Weare not just teaching person-centeredplanning, we are helping to build collabo-rative teams. Alaska has just begun itsjourney, but the goal is in sight!

Karen Ward is Director of the Center forHuman Development (University AffiliatedProgram), at the University of Alaska,Anchorage; Gordon Ward is a Work StudySpecialist with the Matanuska SusitnaSchool District, Wasilla; Brenda Ross isCoordinator of the Anchorage SchoolDistrict Parent Resource Center; and RobynRehmann is Executive Director of SpecialEducation for the Anchorage School District.They may be reached at 907/272-8270 or bye-mail at afkmw@uaa.alaska.edu.

22

A Person-Centered Approach

to School System Planning

by Ken Woodley

Most large organizations, includingschool districts, are, by their very defini-tion, a mix of people, environments, lo-cations, and workplace cultures. For thisreason, planning in such environmentshas been a daunting challenge for thosecharged with the responsibility of pro-viding leadership and strategic direction.The focus of much planning has been tocontrol, direct, and mold the constituentelements of the organization into oneperson's particular vision. The end resulthas often been dismal. Lack of correla-tion between outcomes and plans, appar-ent lack of employee "buy-in", and asense of futility coupled with a reluctanceto initiate planning activities have beenfrequent, unfortunate outcomes.

Planning in school systems has oftenmeant the application of highly devel-oped "models" taken from other con-texts. These models have usually had, attheir cores, overwhelming concern formoney, targets, efficiency (usually relatedin cost-effectiveness terms), and a myriadof other measurable and observabledescriptors. Unfortunately, in the rush toget things done, educators have simplyaccepted such models and transferredthem to the school environment withoutcritical analysis of the contexts that gaverise to them, and judgement about theirappropriateness for school systems.

Our school district has had to realizethe increasing importance of planning asa means of responding to the heightenedcall for accountability coming from allquarters of the public sector. It is obvi-ous that changes resulting from eco-nomic variations, technological ad-vances, demographic shifts, and count-less other uncontrollable variables arenot going to diminish. The truism of"change being the only constant" is uponus. So, we have turned toward improvingthe effectiveness of our planning.

In working with staff on small pro-jects, we had started to notice that the

planning process moved along morequickly and productively when staffwere empowered. We found that locat-ing major portions of the planning pro-cess in the hands of those who were go-ing to have to carry out the plans paidbig dividends: The focus immediatelyshifted from questions of power, com-pliance, rights, and the like to discus-sions of substance centered on the itemsunder consideration. Teachers movedaway from asking questions such as,"Who is responsible for disciplining stu-dents caught fighting?" Instead, theystarted asking questions like "What doesa safe school look like for our studentsand staff?" The caliber of discussion andthe resulting plans improved dramati-cally when people were empowered.Consideration for students and theirneeds became much easier when theplanners felt they had been considered.It was as if they had been freed to go be-yond themselves and to engage in pro-fessional altruism.

Our experiences slowly led us to un-derstand a critical element of our orga-nization. We had been created to deliverservices to individuals, and our majorbudget expenditure was on personnel.Because of this, "people" needed to be amajor focus in all that we did. This real-ization allowed us to start viewing andtreating people as an investment insteadof a cost item. We began to understandthat more significant gains were to bemade if we put our people at the center,and that this approach delivered greaterresults for those we sought to serve.

A focus on people has proven criticalfor us because it has allowed planning toincorporate the individual assumptionsand premises of those who will have tofollow through on the plans. When plan-ning is focused solely on results andbudgets, it leaves important human di-mensions untouched. Centering plan-ning on people allows for significant hu-

23

man motivators to become woven intothe process, thereby heightening thelikelihood of commitment and success.

Focusing the planning process onpeople as opposed to things has allowedus to plot major change in the directionof our organization. Our commitmentto people-centered planning resulted inour adoption of the PATH model forplanning in all of our schools. Involvingstaff and students, and letting themhave a major role in shaping the future,has resulted in plans that will yield fargreater benefits to our district thanwould have occurred through more con-ventional strategic planning approaches.Knowing that their own needs are beingconsidered, staff and students have beenable to come to new understandingsabout the future, and to commit to aplanning vision that has been enrichedthrough everyone's participation.

The impact of this shift in ourdistrict's culture has been felt on the in-dividual level, as well, including in theway we work with students who have de-velopmental disabilities. Our previousculture tended to be at odds with the useof person-centered planning to help stu-dents identify dreams and plans fortheir own lives. We would have beenmore likely to ask questions about costsand resources than about personal jour-neys and circles of support. Now, ourentire district is better able to supportstudents with disabilities in accessingand realizing their personal visions bytraveling with them as they grow andchange. We have now become a commu-nity that listens and responds to indi-viduals' dreams and needs.

Ken Woodley is Superintendent ofEducation for the Yellowknife EducationDistrict No. 1, Yellowknife, NorthwestTerritories, Canada. He may be reachedat 867/873-5050 and by e-mad atken_woodley@learnnet.nt.ca.

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22

It's for All of Us, or Not at All

by Andy Smith

Another day, another phone call. Some-one will inquire if we can teach their or-ganization about person-centered plan-ning. In reply, we will tell them that forfour years we have been working withorganizations that provide support togroups of people who are at risk of so-cial exclusion. We will tell them we haverun learning groups for facilitators, fami-lies, and people who use human services,and that person-centered planning has

Some people with disabilities have

experienced person-centered

planning as another imposition

delivered by the service world.

been something that we have foundworks in a variety of ways. We will alsokeep in mind that we have seen somepeople and organizations use person-centered planning tools and techniquesas fashionable replacements for the dis-empowering systems they used before.As a result, some people with disabilitieshave experienced person-centered plan-ning as yet another imposition deliveredby the service world.

We have realized the vital importanceof three core principles regarding theuse of person-centered planning: We allneed support, we are all ready, and we allneed to dream. Without careful and con-stant adherence to these principles, weare in danger of inflicting powerful pro-cesses on others without actually under-standing the impact this has. The end re-sult can be disastrous at worst, and ameaningless paper exercise, at best. Thefollowing examples show a brighter sideof the picture in Scotland today andhighlight the importance of principlesover planning processes.

We All Need Support

One professional who participated inour facilitator training for person-cen-tered planning was unhappy with herwork as a manager of community healthcare providers. She was working for anorganization she knew was moribundand felt unable to move forward. As a fa-cilitator who already worked in a per-son-centered way, she brought thisproblem to our learning group. Togetherwe worked out a plan with her and a fewclose friends she had chosen. The PATHshe then developed held together thatunique blend of the ordinary and theprofound which is at the heart of all ourfutures. Through a careful process ofcombining both her vision for the longhaul and realistic, practical goals, shegained the resiliency to leave her workand set up a business in an entirely dif-ferent field. She also now works parttime as an advocate and facilitator.

Another member of our facilitatorsgroup used the MAP she developed forherself as a means to find the strengthto tackle the management in her organi-zation. The organization and she herselfhad seen her job as recruiting volunteersto help out. Following her MAP allowedher to feel able enough to persuade theorganization to re-employ her as a com-munity builder. Her job now is one ofenabling the mutual exchange of giftsbetween people using her service andothers in the wider community.

We need to realize that at certaintimes in our lives (whether we use ser-vices or provide them) we will need thehelp and support of friends, family, andcolleagues to help us articulate ourdreams and aspirations. Organizationsthat are open to using person-centeredapproaches within their teams can moredeeply appreciate universal needs andhow we sometimes must liberate energyand commitment among those who sup-port us in order to help us meet them.

We Are All Ready

We worked with an organization thatsupported people who have learning dis-abilities, and which was facing majorchange. But, it was also open to seeing ev-eryone as potential contributors to shap-ing the future. Four individuals who usedthe service were trained together with asmall group of staff using tools like Es-sential Lifestyle Planning and MAPS. Ev-eryone was able to help on everyone else'spersonal plan. We knew that the question"Are people with disabilities specifi-cally, the people we serve really readyfor person-centered planning?" was onethat many professionals raised. Welearned quickly that some staff were lessready to work out their own future plansthan the people who used their servicesless ready, that is, in terms of feelingstrong enough to look at change head on.For instance, the willingness of one ofthe four individuals to explore his owndreams and nightmares encouraged anemployee of the service to begin thedreaming process himself, and eventuallyhe found a new job supporting people toleave a large institution. Another of thefour was ready to engage in the planningprocess, but she felt alone because she feltunable to share her dreams with her fam-ily and had few real friends with whom totalk. As the planning advanced, peoplerallied around her because they knewthat the issue was not the need to waituntil she was ready, but the need to pro-vide a different type of support to hernow. They wanted to discover ways tobuild her strength together, and by doingthat she was eventually able to explain toher family what she really wanted.

We have inherited a legacy of thinkingabout people who are now socially ex-cluded which tells us that only whenpeople can prove their readiness forchange through the acquisition of skills,abilities or behaviors can they take aplace on our society. Organizations caninvalidate the readiness of some peoplewho have been patient for a long time. By

24

using person-centered approachesthroughout organizations we can betterunderstand organizational unreadinessand our own fears about change.

We All Need to Dream

For all of us, our dreams expand thespace into which we can move. Therecome many times in all our lives whenthe right thing to do in the moment is toimagine new possibilities. Yet, forpeople with developmental disabilitiesand their families, dreaming has beensomething the rest of the world has con-sciously and unconsciously forbiddenthem. They have been told that the lifethat children with disabilities can havecompared to the life others live will notbe the same. In addition, families haveoften been let down, time after time, bythe service world.

Spending time with several familiesrecently we worked to help nurture thedreams of young people with disabilitiesas well as the dreams held by membersof the families, and then shared these to-gether. One father dreamt of havingmore time to explore his interest in wa-ter color painting and work for hischurch. His son dreamt of living on an-other planet where he could go any-where easily just by pressing a buttona place where there was a chance to hangout with his friends, play pool, and playhis music loudly. When the father lis-tened to the son's dream, they were ableto see the power of each others' dreamsand the need to fulfil them.

Organizations sometimes fail tomake the connection between dreamingthat happens.within the organizationand the dreaming of the people theyserve. Organization leaders may dreamof mission and vision; other individualsworking there may dream of promo-tions, new careers, or a better world. Iforganizations explore mutualities be-tween these dreams and those of peoplethey serve, they can experience an in-creasing sense of solidarity in our com-mon humanity.

In Pursuit of Shared Meaning

Over and over again we have seen andheard about people receiving so-calledperson-centered plans where the em-phasis has been on the solutions thathave emerged or on how the person's lifehas changed. Outcomes are important,but many person-centered approachesare powerful in part because they har-ness creativity. If there is enough of thisenergy around then things might hap-pen. However, the power of person-cen-tered planning can be misused and re-sult in sophisticated control programs ifthere is not an understanding amongthe people facilitating about what think-ing in this way means for us all.

The greatest power in all the pro-cesses we use arises not just from someneat and clever ordering of questions,but from the creation of a shared under-standing about where a person mightbe, who they really are, the gifts anddreams they have, and the supportthey'll need to make a new future pos-sible. The only way we know how toteach this well is to help everyone in-volved develop a shared sense of thesecore qualities that we all have in com-mon. We do this by first helping thepeople who make up organizations planfor their own lives, whether they be par-ents, professionals or whomever. In thisway, organizations can learn that at theheart of a person-centered philosophy isa deep respect for all our hidden talents,unspoken aspirations, and interdepen-dence. For facilitators, this means regu-larly planning for ourselves, and withour friends and family. By doing this welearn to develop a sense of compassionbased on commonality, not pity. Follow-ing on from this we become more awareabout how to generate empathy whenplanning with others, which is a prereq-uisite to making real, sustainable changepossible.

Andy Smith is a Consultant with SHS inEdinburgh, United Kingdom. He may be

reached at (44) 131-538-7717 or by e-mail

at 100407.2626@Compuserve.com.

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Taking a New View ...

"If Maureen died tonight, "I asked them,

"who would care?"Someone said her

mother probably would. Anyone else?"1

asked. The group thought about it and de-

cided "Not really."So this woman who has

no home, whose one emotional relation-

ship with someone other than her mother

has been abusive, who makes about $5 a

week, and who has no friends is difficult to

be around. In the face of all this by the

way of comfort and assistance she is told

that if she is "appropriate"she can earn two

cans of diet cola a day. And then we get

confused when she is still noisy, demand-

ing, and "impossible...It took me awhile to

notice the perilous gap between what we

know and what we do. Knowing her plight

as a homeless, poor, and battered woman

would ordinarily move people to think in

terms of getting her some emergency

money, a reliable income, and a safe home.

Instead, because of her labels as "mentally

retarded" and "emotionally disturbed"she

was seen as needing "treatment'.'...

Where hurt has been, there is fear; fear

and love cannot live in the same house;

and where there is no love, there must be

control.This powerful syllogism can help us

understand the lives of people with dis-

abilities and our own, as well. If we are to

be of help to others, we need to understand

our own lives.

Excerpted with permission from Lovett, H. (1996).Learning to listen: Positive approaches and peoplewith difficult behavior. Baltimore: Paul H. BrookesPublishing. Pages 2 & 224.

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24

What's Most Important? ilis People .

by Te Ripowai Higgins

Hiitia te rito o te harakeke

kei hea te kömako e kö?Rere ki uta?

Rere ki tai?

Ki mai koe ki ahau

He aha te mea nui o te ao?Mau e atu:He tangata, he tangata,he tangata!

Pluck out the centre shoot of the flax bushwhere would the bellbird sing?Should it fly inland?

Should it fly to sea?

Ask me

What is most important in the world?I would say:

'Tis people, 'tis people,'tis people!

This proverb I share from my culture,from my land, from my ancestors, theMaori (aboriginals) of Aotearoa/NewZealand. Proverbs by their very natureuse metaphors to convey the heart oftheir message. They are intended to gen-erate analysis, interpretation, reflection,and ultimately action. This proverb has amessage that's simple yet powerful.

Flax is a familiar plant on theAotearoa/ New Zealand landscape, grow-ing in clumps of sword-like blades in afan formation. It has inspired manyMaori proverbs, and is used as a meta-phor for the family. The rito (centershoot) is the child, protected on eitherside by its "parents," and the outer bladesare the "extended family." All have a roleto ensure the survival of the plant. InMaori culture, grandparents/parents arenot just biological, but all those genera-tions who are collectively responsible forthe nurturing and care of the child. Thegrandparents' generation have specialand critical responsibility for the child'smental, spiritual, educational well-being;the parents are focused on ensuringphysical well-being. A traditional Maoriwhanau (extended family) can range from30 to 230 members.

Flax was and continues to be used byMaori for weaving and medicine, there-fore care must be taken to ensure thecenter three blades are protected. Let'sexplore this metaphor. The rito (centreshoot) is the most vulnerable memberof the community. The embracing outerblades are all critical for it's well-being.When blades are cut for weaving, onlythe very outer blades are removed. Likethe extended family, flax has manyblades, each with its own distinctivecharacter and place in embracing themost vulnerable parts. As with life, socomes death; the soil gets nourishmentand the root system remains healthy.Those departed continue to play an im-portant part in the life of the vulnerable.They are the guides, the exemplars.

The bellbird (an outsider) is also anintegral part of this community. Whenit seeks nourishment from the flower, itpollinates and strengthens the plantwith new genes, new gifts. Like the bell-bird, the good facilitator of person-cen-tered planning nurtures the gifts of thepeople and guides them in the directionof their dreams.

The power to decide the fate of thisplant belongs to the human elementthe weavers. Our weavers are like sym-pathetic facilitators. They have power,and in setting guidelines they shapewhether the flax (or people) will be giventhe chance to learn with future genera-tions. The weavers, with their customsand cultural practices, set the frame-work, remind us of opportunities, andhopefully ensure that the flax survives.

A weaver can turn flax into an ordi-nary object or a fine piece of art. A per-son-centered planning facilitator canmanage the warehouse (doing it like itsalways been done) or create opportuni-ties for human magic and art (doingsomething new and creative). We cancreate circles where all benefit and learn,and the place of each is respected.

Nevertheless, I must pose the un-thinkable question. What if a better,

stronger, more durable material is dis-covered? Will the weaver relinquishtheir relationship in this cycle? Will weabandon the flax and drain the swamp?Will we abandon the weaver? The prov-erb teaches us to stop and think beforewe act. That is its purpose to continu-ally challenge and remind us of the con-sequences of our actions.

Today, Maori people are strugglingto maintain our traditional society andnatural community the whanau (ex-tended family). One hundred and sixtyyears of colonization and assimilationpolicies have driven our culture to thebrink of destruction. The more commu-nities have become isolated from eachother, the more the spirit of defianceand resistance is becoming the renais-sance of Maori culture. We understandthis by learning from another proverb:

He tihi maunga e pikihia

He tihi moana e ekehia

He tihi tangata e kore

e pikihia, e ekehia

he tapu, he tapu

Mountain summits are conqueredMountainous oceans are conqueredThe summits of the human spirit willnever be conqueredfor it is sacred (unconquerable)

It is that unconquerable spirit of the hu-man species that needs to be strength-ened. We must challenge and give hopefor communities and people to takeback control from the "professionals" tothemselves. This is not simple to do oreven say, but it is right and it is time.

Te Ripowai Higgins is a Senior Lecturer in

Maori Studies at Te Kawa a Maui, TheSchool of Maori Studies, Victoria

University of Wellington, Aotearoa/NewZealand. She may be reached at 64-04-495-5233 (ext. 8614) or by e-mail at

teripowaLhiggins@vuw.ac.nz.

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Resources About Person-Centered Planning

People, Plans and Possibilities(1997). By H. Sanderson, J. Kennedy,P. Ritchie, with G. Goodwin. Thisbook provides a comprehensive over-view of the history and practice ofperson-centered planning, looking atfive planning tools commonly usedand their impact on the lives of indi-viduals as well as organizations.Available from SHS, Edinburgh,United Kingdom (44) 131-538-7717(voice), (44) 131-538-7719 (fax).

Waddie Welcome: A Man WhoCannot be Denied. This 26-minutevideotape is the story of a man bornwith cerebral palsy in 1914. For over60 years he lived surrounded by thelove and care of family and friends,but after his last surviving brotherdied he was placed in a nursinghome. He resolved to live once morein a home with a family with chil-dren, attend church, interact withpeople, and contribute to his com-munity. His personal vision was sup-ported by a circle of friends and afterover two years of person-centeredplanning, they brought his vision toreality. Available from Program De-velopment Associates, Cicero,New York, 800/543-2119 (voice),315/452-0710 (fax).

PAM Training Video: Introduc-tion to PATH. (1994). By InclusionPress and Parashoot Productions.This 35-minute training video showsPATH with Joe, a man who has cere-bral palsy who is moving from asmall institution to his own apart-ment. The videotape illustrates theeight steps of the PATH process withJoe, his family, and friends. Availablefrom Inclusion Press, Toronto,Ontario, Canada, 416/658-5363(voice), 416/658-5067 (fax).

PATH Workbook (2nd edition,1993). By Inclusion Press. A work-book and guide to the PATH process.PATH is an eight-step planning tooland problem-solving approach thatinvolves dreaming from the future

and ending with an action plan forthe present. Color graphics are in-cluded as an example. This is anessential tool for anyone thinkingabout or using PATH in person-cen-tered planning with individuals,families, or organizations. Availablefrom Inclusion Press, Toronto,Ontario, Canada, 416/658-5363(voice), 416/658-5067 (fax).

MAPS Training Video: Shafik'sMap. (1996). Produced by InclusionPress and Parashoot Productions.This 35-minute videotape shows afamily going through the MAPS pro-cess and provides insight into what isgoing on behind the scenes in the lifeof the family. Available from Inclu-sion Press, Toronto, Ontario,Canada, 416/658-5363 (voice), 416/658-5067 (fax).

Learning Listen: Positive Ap-proaches and People with Diffi-cult Behavior (1996). By H. Lovett.Observations about the ways inwhich persons with "difficult behav-ior" are responded to by individualsand systems. Available from Paul H.Brookes Publishing Co. (U.S.), 800/638-3775 (voice), 410/337-8539 (fax);Irwin Publishing (Canada), 800/263-7824 (voice), 905/660-0676 (fax); Jes-sica Kingsley Publishers (U.K., Eu-rope, Middle East), 44-0-171-833-2307 (voice), 44-0-171-837-2917 (fax);and MacLennan & Petty Pty. Ltd.(Australia, New Zealand), 61-2-9669-5755 (voice), 61-2-9669-5997 (fax).

Circles of Friends: A Peer Supportand Inclusion Workbook for Sec-ondary Schools (in press). By D.Wilson and C. Newton. This bookoutlines the values, philosophy, andrationale of Circles of Friends foreducators who share a commitmentto full student participation in theschool community. It addresses thestages of planning, setting up, andrunning a Circle within a secondaryschool setting, and outlines the pit-falls to be avoided and the opportuni-

27

ties available for supporting the so-cial inclusion of vulnerable students.Available from Folens, Dunstable,United Kingdom; the e-mail addressis Folens@Folens.co.uk.

Remembering the Soul of OurWork (1992). By C.L. and J. O'Brien.This book of stories by staff mem-bers of Options in Community Liv-ing focuses on the human side ofsupporting people in building com-munity the joys, frustrations, victo-ries, and dilemmas. Available fromOptions in Community Living, Madi-son, Wisconsin, 608/249-1585(voice), 608/249-3372 (fax).

It's My Meeting! A Family/Con-sumer Pocket Guide to Participat-ing in Person-Centered Planning(1996). By D. DiLeo. This booklet de-scribes person-centered planningand how families and consumers canmake use of the process. Availablefrom Training Resource Network,Inc., St. Augustine, Florida, 904/823-9800 (voice), 904/823-3554 (fax).

Mapping Inner Space: Learningand Teaching Mind Mapping(1991). By N. Margulies. A guide tomind mapping, a form of graphicrepresentation that enables users tocapture information in a visual for-mat that clearly conveys the essentialconcepts and relationships betweenthem. This is a useful tool in a varietyof planning processes. Also availableis Maps, Mindscapes, and More(1993), a 90-minute videotape dem-onstrating visual-spatial techniquesfor graphic representation of ideas.Available from Zephyr Press, Tucson,Arizona, 800/232-2187 (voice), 520/323-9402 (fax).

Essential Lifestyle PlanningWebsite (http://www.napanet.net/business/personal/ASA/friends.html). The section titled MichaelSmull and Friends contains over adozen documents on various aspectsof Essential Lifestyle Planning.

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Snow, continuedfrom page 1

giving strength to the directions desiredby the central individual. By doing so,we have stood behind our ethic thatnormal" is not always best, and "usual"

is not always the way things have to be.In this, we have added our voices to

other voices of the latter part of thiscentury who are speaking against ourcultural and political myopia. We are as-serting that diversity in all of life is ofgreat value, and that we plan to keep itas a regular part of our communities.

Judith A. Snow is Senior Associate with theCenter for Integrated Education andCommunity, Toronto, Ontario, Canada.She may be reached at 416/538-9344 or bye-mail at 73742.3523@compuserve.com.

Abery, continuedfrom page 3

others who are involved in the process,rewarding individuals for challengingthe status quo and the tendency of all ofus to continue doing things the way theyhave always been done, and a realizationthat person-centered planning is hard,messy, and an ongoing process a pro-cess that offers no guarantees, but pro-vides people with a roadmap to followon their journey to a better future.

Counting the Costs

The question, "What are the costs?" isnot one to which we can provide a directanswer. Although such a query mightappear justifiable from an administra-tive standpoint, the idea of affixing costsand placing limits upon the resourcespeople have available to live the livesthey envision for themselves is inimicalto the basic core of person-centeredplanning. It is true that to effectively fa-cilitate people coming together andworking collaboratively to support oth-ers, time and energy are necessary. Itmay also be the case that what is neededto support a person reaching his or hervision for the future is not available andmust be created, requiring even more

work. The time and effort spent in theseendeavors, however, should be thoughtof not as costs, but as investments in-vestments in a person who has the rightto live adult life as he or she wants, notas others expect.

Considered in this manner, the realquestion is, "What is the cost of failingto plan in a person-centered manner?"Our most concise response to this ques-tion is, "enormous." Failing to offer op-portunities for persons to create visionsfor the future and direct their own livesmeans that individuals are unlikely tohave the chance to develop to their full-est, and to use their gifts and capabilitiesto enrich the lives of others. It means wehave abrogated our responsibilities asprofessionals and as persons to supportour fellow humans, and that, as a whole,our society is diminished. Thinkingabout costs in this way, it becomes clearthat we cannot afford to plan and pro-vide support services in a manner that isanything but person-centered.

Brian Abery is Coordinator of School-Age

Services and Marijo McBride is ProjectCoordinator with the Institute on Com-munity Integration, University of Minne-sota, Minneapolis. Brian may be reachedat 612/625-5592 or by e-mail at abery001@umn.edu. Marijo may be reached at612/624-6830 or mcbri001@umn.edu.

Pearpoint, continuedfrom page 5

sustain us on that life journey. MAPSand PATH do not guarantee we willachieve our dreams; they do help us tolive our lives on a journey of hope, ac-complishment, and wonder.

Critics say that MAPS and PATH arenot accountable because they are notpurely responsive to the needs ofbureaucratic structures. We disagree.They are profoundly accountable. Thestumbling block is accountable towhom? Person-centered planning toolsare accountable to the individual, familyor team on whom they are focused.Some critics are also concerned thatMAPS and PATH are "individualistic."

28

We believe they are personalized andpromote interdependence. Substantialportions of the tools look at who is inour circle (our lives), who we need to en-roll, and what specific actions we have totake over time to make our dreams hap-pen. All of these rings explore and de-velop our interdependence rather thanour isolation.

Do MAPS and PATH always work?No! A plan is simply that a directionwith a hope that something will happen.There are no guarantees. When person-centered planning tools are used cor-rectly with the spirit of the heart, theyare never about a person in isolation andalways about a person (or a family orgroup) in a context of interdependence.The plan mobilizes that network ofpeople to be part of the implementa-tion. The illusion that the PATH (or anyother tool) is done or completed aftertwo hours or a day is a misrepresenta-tion of the essence of the tool. The planis not done because it is posted on thewall or placed on a chart. It is completedwhen a person lives it.

Seeing Differently

MAPS are PATH are about focusing onhuman beings to help design and de-velop plans for their future. They are forall people. If we see people as "clients,""consumers," or "special ed students,"or if we assert power over people, we arenot doing MAPS or PATH. These toolsare for human beings not labels. Thisis full of paradox because it is simulta-neously a very simple concept and enor-mously difficult to implement. It re-quires us to challenge and refocus valuesthat we "learned wrong" and must "re-learn." This is hard but necessary work.

The artist, the architect, the musi-cian, the poet, the writer all have muchto teach us about person-centeredplanning. A sculptor sees a piece of artin the raw stone or wood. An architectenvisions a building when overseeing anaked piece of earth. A musician hears ascore in the breeze and in her head. So,too, the artist of person-centered plan-ning sees the full human being through

the layers of societal rules and normsthat have often corroded and encasedthe human spirit.

People with disabilities have oftenbeen buried under a ton of labels andphrases that mask who they are. Themore oppressed and vulnerable the "hu-man being" the more talented and sensi-

It is about sharing life, sharing

power, giving up control,

encouraging interdependence,

and getting to what really

matters to makes someone's life

not perfect, but meanin

tive our artist facilitator needs to be. Per-son-centered planning is, in essence, lis-tening and sharing vulnerability. It isabout sharing life, sharing power, givingup control, encouraging interdepen-dence, and getting to what really mat-ters to makes someone's life not perfect,but meaningful. It is about nourishingthe humanity and gifts in each of us.

Jack Pearpoint and Marsha Forest are thefounders of the Centre for Integrated Edu-cation and Inclusion Press International,Toronto, Ontario, Canada. For furtherinformation on MAPS and PATH, as wellas information about facilitator training,contact them at 416/658-5363 or by e-mailat 74670.1124@Compuserve.com. Or viewthe Inclusion Press website at http://inclusion.com.

Smull, continuedfrom page 9

working? What have we learned? Whathave we tried? What else could we try?What else do we need to learn? Askthese questions often and in as manyways as makes sense. Write the answerson the person-centered plans. Wherethis is done those who provide the sup-port see what they learned incorporatedin the plans. They see that what they doand how they do it changes as we alllearn. Those who are supported andthose who provide the supports feel re-spected, and part of a partnership. Theplan becomes a living document that ischanged as our understanding deepensand as the person changes.

Starting Small, Sustaining Change

If we want to change the system we needto look for incremental change as well asrevolutionary change. At any moment,we can create best practice for a fewpeople with enough effort. However, ifthe many are not to be left behind weneed to move our entire system incre-mentally toward best practice. One wayto do this is to think of the changes ashappening in phases. Start by lookingfor every opportunity for best practiceand seize each one. Then think abouthow to start incremental change. Formany it begins with simple person-centered plans where we ask what isimportant to people in everyday life,compare that with how they are livingnow, and change what can be changednow. Change what can be changed with-out having to make major changes instructure or practice.

Making the easy changes is a goodway to start, but an unacceptable placeto stop. If people with disabilities are toget the lives that they want, change hasto continue. Planners, managers, andthose who support have to look at whatpeople want and compare that withtheir capacities to deliver what is beingasked for. Where there is a deficit in ca-pacity they need to look at what needs tochange. Does the deficit in capacity re-flect a deficit in skills, knowledge, or

2 9

competencies? Does the development ofnew capacity require changes in policy,practice, or structure? Is the deficit a re-flection of problems in how we think orin the unwritten rules for how we act? Isthere a problem with organizational cul-ture? Again, this is most easily seen as alearning wheel where we are looking atwhat individuals want and using that tochange the system.

The change literature makes it clearthat there is no change without loss, butwe can make change without wreckage.We need to make sure that those whoprovide the supports are offered thetechnical assistance to find the win-winsolutions. Most will need help to learnthe new skills and make the changes inpractice and culture needed to movefrom a relatively static system of sup-ports to one that has the flexibilityneeded to support people in their evolv-ing visions of how they want to live.They will have to change provideragency culture that sees the funding thatpeople receive as the agency's moneyand uses the language of ownershipabout people with disabilities. Policy-making bodies that mandate person-centered planning will have to makechanges in funding, practices, and struc-tures affecting agencies if plans are to re-flect what individuals want over timeand be implemented. And we all mustsupport a new vision of quality andbuild structures that are rooted in valuesof respect, trust, and partnership.

Michael Small is founder of SupportDevelopment Associates, an organizationproviding training and assistance inorganizational change, Annapolis, Mary-land. He may be reached at 410/626-2707or by e-mail at mwsmull@ compuserve.com.

27

OOPEr MAPACT Fechnze gooses..

Supporting Diversity

Institution Closures

Supported Living

Self-Determination

SelfAdvocacy

Supporting Parents Who Have Cognitive Limitations

Social Inclusion of Adults with Developmental Disabilities

Persons with Disabilities in the Justice System

Leadership by Persons with Developmental Disabilities

Direct Support Workforce Development

Inclusive Recreationfor Families

A publication of the Institute on Community Integration (UAP) and the Research andTraining Center on Community Living, College of Education and Human Development,University of Minnesota. Dedicated to improving community services and social supports

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iiiiplaaFeature Issue on Person-Centered Planning with

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