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Listen, Learn, Act

Selected Writings by Michael W. Smullon Essential Lifestyle Planning,

Self-Determination, andOrganizational Change

January, 2000

Listen/learn

Act on what is learned

See what isnot working

What is not working

Analysis

Act on whatis learned

Individual

Organizatio

n

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Listen, Learn, ActSelected Writings by Michael W. Smull

on Essential Lifestyle Planning,Self-Determination, andOrganizational Change

Support Development Associates3245 Harness Creek Road

Annapolis, MD 21403(410) 626-2707

mwsmull@compuserve.com

January, 2000

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Table of Contents

PagePreface __________________________________________ iii

Person Centered Planning:Should We Do It With Everyone?_____________________ 1

The Importance of Partnerships _____________________ 7

Before You Plan ___________________________________ 11

The Structure of the Plan ___________________________ 15

A Plan Is Not An Outcome __________________________ 19

After the Plan_____________________________________ 25

Changing from Programs to Supports ________________ 31

Thinking About the Roles of the Support Broker ________ 37

Some Characteristics of a System of Support __________ 41

Some Thoughts from the Field:Invited Commentary on Articleson Self-Determination _____________________________ 45

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Preface

Essential lifestyle planning is a guided process for learning how someonewants to live and for developing a plan to help make it happen. It’s also:

• a snapshot of how someone wants to live today, serving as a blueprintfor how to support someone tomorrow;

• a way of organizing and communicating what is important to anindividual in “user friendly”, plain language;

• a flexible process that can be used in combination with other personcentered planning techniques; and,

• a way of making sure that the person is heard, regardless of the severityof his or her disability.

Essential lifestyle plans are developed through a process of listening, learningand acting. In the pages that follow, you will find a collection of articles onhow to do that in a responsible way. A way that supports people in living thegood quality life they deserve.

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Over the past five years personcentered planning has undergone atransformation. It has gone fromsomething mysterious that only afew dedicated and skilled peopledid to something where nearlyeveryone says “I have been doingperson centered planning foryears”. Person centered planningand person centered services havebecome trendy. It has become alitmus test for being politicallycorrect. Any activity where peopleare asked what they like or want isseen as person centered. Further,states, regions, and counties arebeginning to require (or to considerrequiring) person centered planningfor everyone receiving services orentering services.

From my travels (and from thematerials that get sent to me) I havelearned that many of the allegedperson centered plans and personcentered services are not personcentered at all. Plans are being

written where what is important tothose who provide services iswritten as if it were important to theperson receiving services, thatabuse the “voice” of the person (e.g.“I must be restrained”). Peoplewhose only real dream is to get outof the institution they live in haveplans that say that it is their dream tolive by themselves in a house insuburbia. People are askedquestions where they do not havethe life experiences necessary togive an informed answer. Questionsare asked that have the answer builtin. Equally troubling are the honestplans that are not implemented.Over and over again I hear ofpeople who tell us things such asdesperately wanting a newroommates who never get one. Muchof what is being done represents noreal change in practice. It is businessas usual masquerading as beingperson centered.

Person CenteredPlanning: Should We Do ItWith Everyone?by Michael W. Smull

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Person centered planning is ameans not an endA person centered plan is a meansand not an end. The life that theperson wants is the outcome, not theplan that describes it. Personcentered planning is a process oflearning how a person wants to liveand then describing what needs tobe done to help the person movetoward that life. It is a description ofwhere the person wants their life togo and what needs to be done (andwhat needs to be maintained) to getthere. Good plans are rooted in whatis important to the person whiletaking into account all of the otherfactors that impact on the person’slife - the effects of the disability, theviews of those who care about (andknow) the person, and theopportunities as well as thelimitations presented by the needfor public funding.

A person centered plan reflects aprocess:

That is respectful of the personwith the disability, the family, andthose who support the individual;

Where the time and effortnecessary is spent to be sure thatthe “voice” of the person with the

disability is heard, regardless ofthe severity and nature of thedisability; and

Where there is a focus onlearning what is important to theperson in how he or she wants tolive, what is important to thosewho love the person, and anyissues of health and safety (fromthe perspective of the person).

The resulting plan is a writtendescription of what is important tothe person, how any issues of healthor safety must be addressed, andwhat needs to happen to support theperson in their desired life. The plancannot be separated from theprocess. A compromised processproduces a compromised plan.

Beyond these common elementsthere is considerable variation.Some of the better known formalprocesses include: personal futuresplanning; PATH; essential lifestyleplanning; individual service design;24 hour planning; and whole lifeplanning. Additionally there are ahost of processes that have beendeveloped locally. These localprocesses are often unnamed andusually are a blend of the betterknown processes. However, the label

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of the process is not an indicator ofthe utility or integrity of the plan.When done well, what unites all ofthese efforts is a commitment tolearning what is important to peopleand a commitment to implementingwhat was learned. They all requirepartnerships between: the person;those who know the person; thosewho develop the plan; and thosewho implement the plan.

What has been learnedWhere careful planning andimplementation have been done wehave learned that:

When we listen with skill andrespect, we can learn what isimportant to each personregardless of severity ofdisability;

Planning is a continuous effort,what people want tomorrow isdifferent from what they wanttoday;

Growth and learning occurnaturally when people have theopportunities that they want,opportunities that make sense inthe context of what is important tothem;

Providing structure inside thoseopportunities helps people withsevere disabilities access andlearn more from thoseopportunities;

Most of the behaviors that wehave labeled as non-compliance,as challenging, or as problembehaviors, go away when what isimportant to people is present;

Regardless of severity ofdisability, people are able to takepositive control over their lives aswe learn to listen and trustdevelops; and

Building community, a network ofself-sustaining reciprocalrelationships, occurs but it usuallytakes years not months.

We have also learned that whilewhat is most important to people ismodest, implementation isaffordable only if we change the waywe do business. Unless we begin tofund people rather than capacity,individuals rather than houses, wecannot afford to implement planswhere people are asking to changewho they live with or what they do.We have learned that it is our ownstructures that are the barriers and

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that many of the reports of high costsreflect the rigidity of our responses.

Person centered planning is also apromiseShifting a system cannot be done byfiat and it cannot be done overnight.It requires the development ofcapacity, changing the structuresthat define where the system isgoing and what it should payattention to, and it requires politicalcourage and political capital. Someof the ingredients needed to changethe system are:

Training in person centeredthinking for all of the peopleinvolved in planning andimplementation;

Requiring that those who do theplans demonstrate competencyin person centered planning andthat some of their plans beperiodically reviewed;

Training for that those wholicense and inspect and requiringthat they be able to determinethat plans meet criteria and thatthe plans are being implemented;

Changing the rules for servicesand requirements for funding so

that they support personcentered planning andimplementation;

Support (training and technicalassistance) for agencies that wantto change their practices andstructures;

Helping people with disabilitiesand their families buildcommunity before they aredesperate, while families havethe energy and resources to forma partnership; and

Leaders who understand whatreal person centered planning is,the changes needed for theirimplementation, and awillingness to build supportwhile defending the changesfrom those who feel threatened.

At its core, developing andimplementing person centeredplans is about shifting power andcontrol. It is about sharing controlwith the people supported and theirfamilies. To many people this is anopportunity to be embraced but toothers it represents a serious loss ofpower. Person centered planningshould be done with everyone onlywhere there is the willingness to

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make the investments and changesnecessary. However, those who leadmust also sustain the change in theface of resistance and attacks. Thosewho wish to initiate the change needto develop the strategies necessaryto sustain the change. In learningwhat is important to people we makean implicit promise to act on whatwe have learned. We should notmake the promise unless we believewe can keep it.

November, 1996

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Across the country, agencies thatwork with people withdevelopmental disabilities arestruggling to change from puttingpeople in programs to supportingpeople in the lives that they want.Change begins with learning to planwith people rather than planning forthem. Agencies struggle to learnwhat is important to each individualthat they support and to help each ofthese individuals move toward thelife that they want. The initial focusfor most of the agencies that begintO convert from offering programsto offering supports is to helppeople with disabilities get what isimportant within the constraints ofavailable resources and thepresence of any issues of health orsafety. As they continue to struggle,they discover that they need tobroaden their focus. They discoverthat people with disabilities cannotbe empowered unlees those who areproviding the support are alsoempowered,

The managers of these agencieshave discovered the power ofpartnerships. Rather thanaccumulating power, they see theirrole as sharing power. Managershave learned that best practicerequires that the people deliveringthe support feel respected, trusted,and valued. Managers cannot justchange the way that they talk, theymust change the way that they act.They have to change the practices oftheir agency to reflect the valuesthat underlie partnership. Someexamples of partnership in actionare:

At Community Living -Wilmington (a supported livingagency in North Carolina), thepeople who are supported get toselect who works with them whilethe people providing support getto select who they work with.There are boundaries andlimitations in how this works.Neither the people receiving northe people providing support

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need to have “cause” in order tomake a change. However, teamleaders are responsible forinsuring that a request does notjust reflect transient irritation andto insure that the peoplesupported are not left without thesupport that they need.

At the pubic provider agency inManchester, England, pilotefforts to build partnership beginwith staff learning what isimportant to them and thenlearning what is important to thepeople they support. A managerthen facilitates the developmentof a plan where the staff seek toget more of what is importantboth for the people supportedand for themselves. Schedulesand responsibilities have beenchanged. A person eupportedgets to go to her church with astaff member from the samechurch. Staff who are “morningpeople” have swapped coveragetimee with staff who are “eveningpeople”. one ataff member, whowas going to a music club on herown time, is now taking someoneshe supports (who also lovesmusic) to her mueic club as partof work time.

Hope House Foundation, asupported living provider inNorfolk, Virginia, has beenworking on partnerahip for thepast decade. They make sure thatbefore any policy or procedurecan be adopted there areopportunities for all of the peopleeffected to be heard. Staff whowant to learn something thatreflects their personal interestsare supported with dollars thatcome from fund raiaingregardless of whether or notthere is a perceived directbenefit for those supported. Thedisparity between the pay ofmanagers and the pay of directsupport staff is being narrowedon the basia that you cannot saythat support staff are the mostvalued people in the agency andthen pay them at a rate that saysthey have little value.

These agencies, and many othersnationally, have found thatpartnership “pays” in a variety ofways. Practicing partnership notonly enhances the quality of life forthose supported but also effectsother areas such as the rate ofturnover for those people doing thesupport. Agencies like Hope HouseFoundation and Community Living -

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Wilmington report annual turnoverrates that are closer to 10% than tothe 50% plus reported by manycommunity agencies. If agenciea aregoing to move from providingprograms to providing supports theyare aleo going to have to learn topractice partnership. We cannotpractice respect for the people wesupport unless we respect thepeople providing the support.

December, 1996

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Be sure to think before you plan.Thinking about a few issues beforeyou get started can help you achievea better outcome, prevent problems,avoid unnecessary struggle, andsave you from publicembarrassment. Note that the pIansbeing discussed here are not plansdone in training (those issues aredealt with in the ìcriteria for a focuspersonî) but the ordinary, day to dayefforts to understand how someonewants to live and what we are goingto do about it. The overridingprinciple is that a plan is not anoutcome, the life that the personwants is the outcome. The onlyacceptable reason to plan is to helpsomeone move toward the life thatthey desire. In outline the issues tobe understood before you plan are -

Make sure that -

you understand why this plan isbeing done and that the reasonfor doing the plan is acceptable;and,

there is a commitment to act onwhat is learned.

Spend with the person with whoyou are planning before you startthe plan to:

get to know the person and her/his issues;

develop the ground rules for theplanning; and,

do any negotiation necessary tohave a successful outcome.

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Look for opportunities -

to build relationships; and,

help people be a more a part oftheir communities.

Learn if there are any issues andchallenges in developing orimplementing the plan and developstrategies to deal with them

In more detail -

1. Make sure that there is acommitment to act on what islearned. Remember that aplan is not an outcome. A planis an organized way oflearning what is important tosomeone and a description ofwhat we will do to act on whathave learned (includingaddressing any issues ofhealth and safety).

2. More specifically, why thisplan is being done with thisperson - is the purpose:

to help the person move toa new setting; or

to help them get more ofwhat is important to themwhere they currently live;or

better understand how tohelp us support them in thelife that they want whileaddressing issues such as achallenging behavior or acomplex medical need; or

a combination of thesethings.

Once the purpose isunderstood ask what you needto learn and how it might bestbe learned. Rememberessential lifestyle planning isonly one way to learn. If theperson has a clear goal thatwill take some time to achievethink about using PATH. If theperson has a number ofpeople who care deeply, whoare not exclusively paid staff,and you have the skills andenergy to mobilize theserelationships, think aboutdoing a personal futures plan.Keep in mind that you can dopart or all of an essentiallifestyle plan to support thedevelopment and/orimplementation of anotherkind of plan.

3. Try to learn of the challenges/issues present in developing

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and implementing the planbefore you begin. If this is aperson whose parents orguardians have views of whatis important to the person thatare different (from the views ofthe person) try to determinehow those differences can beaddressed. It usually helps toset aside time to listen, to findcommon ground, beforeformal meetings. Always talkwith the focus person abouther/his options and supporther/him in deciding how toproceed. Occasionally thebest short term solution is tonot to do a full plan but to helpthe person find the best shortterm compromise.

Do not forget that there whilesomeone may want somethingthat their parents see asunsafe, he/she may also wantto maintain a goodrelationship with his/herparents.

Do not forget that we all wantmutually exclusive things (e.g.to be skinny and eat whateverwe want or to be rich andwork in human services), thatpart of your job is to learn

what these mutually exclusivethings are and to help theperson find a balance thatworks for them.

Where what the person wnatsis not supported by thosewhose consent or assitance isneeded for that person to getit, be careful. Do not engagein a process where hopes areraised, only to be crushed.(Be honest about what you cando.)

Remember that the bestnegotiation is one that no onenotices. If you can learn aboutlikely conflicts before thatplanning starts you can designa process where:

Everyone feels that they werelistened to and that theyparticipated in a respectfulprocess.

Common ground is identifiedand nurtured (often startingwith agreement that all of ushave the same ultimate goals -for the person we are planningwith to be happy and safe).A dialogue about a balancethat will work for the person

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(and the compromises that willwork for others) is initiatedand supported.

4. Do not forget the mostimportant part - spending timewith the person with who youare planning before you startthe plan to:

get to know the person andher/his issues;

develop the ground rulesfor the planning; and

do any negotiationnecessary to have asuccessful outcome

Develop the ground rulesabout who to talk with, whatcan and cannot be discussed,and how to keep the personinformed. Where the groundrules that the person wantswould interfere with themgetting their life the groundrules are negotiated beforethe planning starts.

5. Look for opportunities to buildrelationships and help theperson be connected to his/her community. Look foropportunities to:

to strengthen and extendcurrent relationships, tobuild new relationships;

build partnerships amongthose who know and careabout the person and withthe community; and

help the person findsituations where their giftsand contributions areappreciated and used.

Do not forget that anacceptable outcome fromìthinking before you planî is todecide not to plan. If the plancannot be done respectfully, ifthere is no commitment toimplement, do not plan. If thereason for planning is notacceptable do not plan. Ifplanning is mandated, thenthe support and monitoringneeded to:

insure respectful planning;and

have reasonable efforts toact on what was learned

also has to be mandatedand provided.

April, 1998

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Following is a summary of thetypical comments that I find myselfwriting over and over again whenreviewing plans. I am using it toinsert comments as it makes sensein my reviews. Those of you whoreview plans may feel free to do thesame. While this is not being writtenas a stand alone document you canuse it as a brief overview of plans intraining. You can also use thesecomments in reviewing your ownplans. This does not replace thelonger descriptions such asReviewing essential lifestyle plans: thecriteria for best plans. It is also awork in progress and I expect that itwill change and get longer as I addmore typical comments to it.

General commentsThink about essential lifestyle plansas having 4 basic sections - anadministrative section, the person’ssection, the support section and theaction plan. Each has a purpose andsome guidelines about what goes inthem and how they are organized.

However, a plan is not an outcome,the only reason to write plans is tohelp people move toward the livesthat they want. Any plan that helpsto make positive changes or helps tomaintain important things is a goodplan. A plan that helps the personmaintain a balance between beinghappy and staying healthy/safe is agood plan. A brilliantly written plan,filled with great information andinsights, that is not used is a badplan. Plans that are not read cannotbe used and plans that are not useddo not matter. Plans with goodinformation that are also easy toread make it more likely that peoplewill get what is important to themand be supported in ways that makesense. Experience has taught us thatplans are more likely to be read ifthey are in outline format and:

• Use complete thoughts but notcomplete sentences;

• Use simple, every daylanguage and have no jargon

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or human service speak;

• Each item listed has enoughdetail and/or enoughexamples that someone newlypresent in the person’s lifewould understand what wasmeant;

• There are no long laundry listsof items, those that go togetherare grouped together, with aspace between groups; and

• Where there are 4 or morethings grouped together thereis a topic statement and theothers follow as bulletsunderneath.

Administrative sectionIn the administrative section thereader should learn: whose plan;when it was done; who contributed;and anything else that is required.This is also where you would tell thereader why the plan was done/whatyou want to learn if this is to beincluded in the plan.

The person’s sectionIn the person’s section begins withan introduction to the person(positive reputation, what people

like and admire about the person)and then tells the reader what isimportant to the person (in 2 or 3sections - most important, 2nd inimportance and - if needed - 3rd inimportance).

What people like and admireabout the person, positivereputationThis section should list what otherpeople like and admire about theperson. It should list things that wemight like or admire about anyone ofroughly the same age. It should notinclude things that we only sayabout people with disabilities or isfaint praise. Where there are morethan 6 or so items listed they shouldbe grouped to make it more likelythat they will be read.

What is important to the personThese 2 or 3 sections describe whatthe person perceives as beingimportant to him or her. It must notinclude items that others thinkshould be important to the person.It should only include those thingsthat the person tells us are important(with words or behavior). Forexample, the first draft of a plandone with a 5 year old with severedisabilities said I must have my foodpureed. As we looked at that we

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realized that what she told us withher behavior was that she hated tochoke or cough when eating.However, it is very important to herhealth that her food be pureed. Sohaving her food be pureed waslisted under what we need to knowor do for her to stay healthy andwhat was listed under mostimportant to her was that she notchoke or cough while eating.

Support SectionIn the support section the readerlearns what others need to know ordo :

• so that the person has what isimportant to him or her; and

• will stay healthy and safe.

For many people, this is where thebalance between happy and safe/healthy is described. The generalrules for support are given withenough specific examples toeliminate ambiguity. Where thereare things that are important to thosewho support the person that are notimportant to the person, they aredescribed in this section. There arenumerous optional parts of thissection that are used as needed. Theones most commonly used describe

how the person communicates andwhat we need to do to help theperson stay healthy.

Action planThe action plan should describewho is going to do what to helppeople move toward the life thatthey want and stay healthy/safe. Itoften describes what needs to bemaintained as well as what will bechanged. The reader should knowwhat is to happen, who isresponsible and the date by when itwill happen. The action plan oftenneeds a bridge to keep peoplefocused on helping the person get abalance that works for them ratherthan a plan to do the more of thesame old things dressed up withnew labels. A section that describeswhat does and doesn’t make sense(what is and is not working) from theperspective of the person and thosewho support the person is often aneffective bridge.

The way the what does and doesn tmake sense section should work is tobegin by looking at what isimportant to the person. Comparethat with the present, with what ishappening now. Make a headingthat says: What makes sense to ....,what is working, what might need to

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be maintained. Make another list.What doesn’t make sense to ...., whatis not working, what might need tobe changed. . Where what makessense (or doesn’t make sense) to theperson is different from what does(or doesn’t) make sense to staff(broadly labeled as us) you need tohave 4 sections. This part of the planshould be based on comparing thepresent (what is happening at thetime of the meeting) with whatshould be happening. It is asnapshot evaluation of the person’slife.

Once you are done, have peoplebegin by looking at what does makesense and point out where we cantake credit for what has been doneand/or acknowledge the goodthings that are present in theperson’s life. Then you look at eachthing that doesn’t make sense, thatmay need to change, to see if thereis something that we can and shoulddo about it. Where the perspectiveof the person is in conflict with theperspective of the others listed, youlook for the balance that will work.You then return to what makes sense.Look for those things that willcontinue only if we are proactive andfor those things that we mightchange (be lost) in the course of

fixing something that does not makesense. Where something is to bedone you should have action stepsthat say what will happen, who is todo it and by when.

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Person centered planning is ourlabel for learning how people wantto live, to learn what is important tothem in everyday life and todiscover how they might want to livein the future. But, a plan is not anoutcome. The only reason to do theplanning is to help people movetoward the life that they want andperson centered planning is only thefirst part of the process. Whetheranyone can get the life described isalso determined by their access toresources and the rules for usingthose resources.

When you put these two thingstogether, planning for your futureand control over resources, you haveself-determination. Not too manyyears ago this was not an issue, mostof the groups pursuing self-determination were individualagencies that believed in helpingpeople with disabilities chart theirown destinies. They gathered circlesof caring people around eachperson to discover what they might

want and used their resources tohelp people move toward the lifethat was described. Now some ofthe public agencies that fund andmanage services are mandatingperson centered planning. They arerequiring that everyone get a personcentered plan. Whether this willresult in people moving toward thelives that they want will depend inpart on the quality of the planningbut also on the control that peoplewill have over the resources.

Those who are the best at both theplanning and helping people havecontrol over their resourcesrecognize that it is as much ajourney as it is a destination. It isabout helping people find andmaintain a balance in their lives. It isa journey because what people wantchanges over time (sometimesquickly and often slowly). Everyonehas to try things to see what they likeand what they like changes as theygrow and mature. It is about helpingpeople find a balance because real

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life is complicated. Most of us wantmutually exclusive things (e.g. to bethin and eat all the fattening food wewant). Most of us need to take intoconsideration the desires andpreferences of other importantpeople in our lives. Many of us havemore that we want than we canafford. Resources are finite, so wehave to decide how to prioritizewhat we want. Good plans are asnapshot that takes of this intoaccount (implicitly or explicitly) at amoment in time. They reflect thecurrent balance that someone wantsand give direction for the future.

Good person centered planningrequires that you be able to learnwhat is important to each person,separate what is important to theperson from what is important toothers, and communicate what youhave learned in a way that othersunderstand. Implementing plans isalso about supporting a journey. Intrendy business terms, it reflectsusing a learning wheel. We beginby listening and trying tounderstand what we hear. We recordwhat we learn in a plan. As we act onwhat we have learned, we see how itworks. And then begin again bylistening and understanding.

Those who fund and regulate needto change the current reality. Formost people with disabilities, whoreceive services, the present realityis a world of programs. Most of thecurrent resources are fullycommitted to buy capacity, to buyslots. There are people living ingroup homes and going tosegregated day services who havetold us that they hate their roommateand are bored during the day. Thereare high school students attendingeducational programs they findmeaningless because they do notprepare them for the future that theydesire for themselves. Wherepeople want change, planningwithout real action simply createscynicism for everyone. One of thetraps that this creates for planning isthat what is available now shapeswhat is asked for.

In trying to not be limited by whatexists we have learned that thekinds of questions that you ask andthe order in which you ask themmake a difference in the outcome.Ask about what is important beforeasking where it could happen.Learn what is important in everydaylife and then look at all the differentways that it could happen. Look atwhat is happening in the rest of the

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world. We now have enough bestpractice, enough pilots, that whatpeople have in mind is likely toalready exist. It may not be nextdoor, it may have been developedon the other side of the US, or in theUK or in Canada, but it is likely toexist. Only after people haveexplored what is possible shouldthey look at what is available now.Where what someone wants is notoffered the next question is how dowe develop it here? Knowing that ithas been done elsewhere givespeople the sense that it can be doneand someone to learn from.

Clearly this is easier to do withpeople who are just coming into thecommunity system, people who areleaving their family homes or areleaving institutions. When we planwith those people who are alreadyreceiving services we are facing anumber of new challenges. One ofthese is that people are not used tolooking outside of their current waysof doing things. Plans that startedwith what was wrong with someonewere typically part of a professionalritual where good paper countedmore than good lives. These planswere written with those who spentthe least time with the person havingthe greatest input. They were read

only by those who wrote them (andthose who inspect), and were notused in everyday life. This part ofprofessional culture continues andinterferes with implementing personcentered plans. To change theculture we have beenrecommending that those whomanage or visit ask some simplequestions after the person centeredplans are written. Ask those beingsupported and those providing theday to day supports: How is the planworking? What have we learned?What have we tried? What elsecould we try? What else do we needto learn? Ask these questions oftenand in as many ways as makessense. Write the answers on theperson centered plans. Where thisis done those who provide thesupport see what they learnedincorporated in the plans. They seethat what they do and how they do itchanges as we all learn. Those whoare supported and those whoprovide the supports feel respected,and part of a partnership. The planbecomes a living document that ischanged as our understandingdeepens and as the person changes.

If we want to change the system weneed to look for incremental changeas well as revolutionary change. At

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any moment, we can create bestpractice for a few people if we put inenough effort and resources.However, if the many are not to beleft behind we need to move ourentire system incrementally towardbest practice. One way to do this isto think of the changes as happeningin phases. Start by looking for everyopportunity for best practice andseize each one. Then think abouthow to start incremental change. Formany it begins with simple personcentered plans where we ask what isimportant to people in everyday life,compare that with how they areliving now, and change what can bechanged now. Change what can bechanged without having to makemajor changes in structure orpractice.

Making the easy changes is a goodway to start, but an unacceptableplace to stop. If people withdisabilities are to get the lives thatthey want, change has to continue.Planners, managers, and those whosupport have to look at what peoplewant and compare that with theircapacities to deliver what is beingasked for. Where there is a deficit incapacity they need to look at whatneeds to change. Does the deficit incapacity reflect a deficit in skills,

knowledge, or competencies? Doesthe development of new capacityrequire changes in policy, practice,or structure? Is the deficit areflection of problems in how wethink or in the unwritten rules forhow we act, is there a problem withorganizational culture? Again, this ismost easily seen as a learning wheelwhere we are looking at whatindividuals want and using that tochange the system.

Those who mandate the planningwill need to make changes infunding, practices, and structures ifplans are to reflect what people wantand be implemented. They need toinvest in the new vision of quality.They will need to build structuresthat are rooted in values of respect,trust, and partnership. They willhave to change a provider agencyculture that sees the funding thatpeople receive as the agency’smoney and uses the language ofownership about people withdisabilities. And they need to dothis with a minimum of wreckage.

Those who get the support need tobe able to say that I am moving and Iam taking my money with me.However, those who are left behindneed to be able to continue to live as

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they wish. The change literaturemakes it clear that there is nochange without loss but we canmake change without wreckage. Weneed to make sure that those whoprovide the supports are offered thetechnical assistance to find the win-win solutions. Most will need help tolearn the new skills and make thechanges in practice and cultureneeded to move from a relativelystatic system of supports to one thathas the flexibility needed to supportpeople in their evolving visions ofhow they want to live.

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Introduction. Learning how peoplewant to live and then doing nothingwith the information is a form ofabuse. A good plan not only clarifieswhat each individual wants butcreates the perception that thosewho participated in the planning willdo something about it. Planningshould only occur where there is acommitment to implement. Thechallenge in implementation iswhere to start. The disparitybetween how people want to liveand how they are living often createsa feeling of being overwhelmed, ofnot knowing where or how to start.The following is an effort to assistthose who are engaged in thisstruggle and to reduceimplementation to its essentialelements.

Learning how people want to live.The process of implementation of aperson centered plan begins withlearning how people want to livethrough a structured process of

asking and listening. Honestplanning is never finished. Peoplecontinue to grow and change. Aswhat is important to them changesand as our understanding continuesto deepen, the plans should change.Plans are a snapshot of howsomeone wants to live today, servingas a blueprint for how to supportsomeone tomorrow. They need to bewritten down so that we have abenchmark of how people want tolive. Honest plans also reflect howeach individual wants to live, nothow we think they should live. Plansshould reflect the typically modestwishes and desires of the personand not represent fantasy of the“good life” from the person doingthe planning. Person centeredplanning can be learned by readingand practicing but it is easier (andsafer for people with disabilities) tolearn from others who have beentrained.

After the Planby Michael W. Smull

Excerpted from Developing First Plans: A Guideto Developing Essential Lifestyle Plans

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Continuously considering issuesof health and safety. Doing personcentered planning does not relieveus of the obligation to address issuesof health and safety. People who areunusually vulnerable need to havesafeguards, and people withmedical needs must have adequatehealth care. The challenge is toconsider these issues within thecontext of how the person wants tolive. In careful implementation,issues of health and safety are notconsidered only once, they arecontinuously considered. Thechallenge in implementation is toenhance safety and ensure healthwithout compromising those thingsthat are important to the person.Once there is an understanding ofhow the person wants to live, anycompromises in what is important tothe person are made consciously,after efforts have been made to thinkof how the person can have what isimportant and still be safe andhealthy.

Comparing how the person wantsto live with how the person isliving. Comparing how peoplewant to live with how they are livingis a form of discrepancy analysis.The result creates the agenda foraction. Knowing what is important to

a person (and knowing howimportant it is) is followed bylooking at how the person is livingnow and determining to whatdegree each of these things ispresent or absent. Carefulconsideration of the differencebetween what people want and whatthey have shows what parts of theirlives make sense and what parts donot.

Giving credit for those things thatare being done that do makesense (and continuing to do them).It is important not only to highlightthe need for change but to highlightthose things that are being donewell. There is an unfortunatetendency to wallow in blame andguilt when the discrepancies areseen between what is important tothe persons served and how wehave been supporting them. A senseof urgency is needed but guilt is nothelpful. Rhonda’s story illustratesthese issues. How Rhonda was beingsupported Monday through Fridayreflected a deep caring andunderstanding of how she wanted tolive. Although she does not usewords to talk, staff who loved herwere listening to her behavior andhonoring her positive rituals andchoices. As a person centered plan

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was developed with Rhonda, itbecame clear that the weekend staffdid not know her as well and werenot listening. The reaction of thepeople who supported Rhondaduring the week was dismay anddetermination. They were pleased athow much they knew and dismayedat how it was not being used to helpRhonda on the weekends. Talkingabout what was going well validatedthe efforts of the direct care staffwho loved Rhonda and werelistening to her. Looking at thediscrepancy reframed what hadbeen seen as her “behaviorproblems” on weekends into aproblem with the support she wasbeing given. It gave a sense ofdirection.

Changes that can be made withincurrent structures and resources.Rhonda’s life also provides anexample of how needed changescan occur within current structureand resources. Planning with Rhondamade it clear that she must besupported by people who are calm,soft spoken and not “in her face.”She must be supported by peoplewho understand how shecommunicates with her behavior,who listen to what she is saying.Some of the people supporting her

on the weekendswere not calm orsoft spoken andtended to “get inher face.” They were the wrongpeople to support Rhonda. Theywere not “bad” people, it was a badmatch. With some rearranging ofwhere people worked Rhondabegan to have weekend support thatmade sense to her. The staff whoknow Rhonda also developed a“cheat sheet” that told how tointerpret what Rhonda was sayingwith her behavior. For example,everyone who supports Rhonda nowknows she tells you when she wantsto get up in the morning by being onher stomach, propped up on herelbows. Her “problem behavior” isgone and someone who was labeled“nonverbal” is now described as“outspoken.”

Those that require changes incurrent structures and/orresources. Some of the issue’s inHarry’s life illustrate how somechanges can be made immediatelywhile others will take time andrequire changes in structure. Harrywill not eat with people that hedislikes and shares his house with aroommate whom he stronglydislikes. He does like eating in his

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room, by himself. Using typical“group home thinking” staff used tosay: “We eat family style and we alleat together.” As staff learned aboutchoice they were willing to supportHarry eating in his room-except thatit would not be “fair” to anotherroommate. Harry had anotherroommate who liked to store food inhis room. Staff felt that they could notlet Harry do something that anotherperson in the house could not do.They did not feel that the fellow who“hoarded” food could be allowed toeat in his room because it wouldcreate a health issue as perishablefood aged. In trying to honor choice,staff were saying that Harry did nothave to eat with everyone, but therewere no in-home alternatives. Harrycould, and often does, eat withfriends and relatives who liveelsewhere but he was also simplynot eating some nights.

When we did the planning withHarry, the fellow who stored food inhis room had moved, so “fairness”was no longer an issue. (If thatroommate had been present theargument would have been madethat treating everyone the same inthis circumstance is inherentlyunfair.) As the issues for Harry werereviewed, it was clear that

supporting Harry in eating in hisroom made sense. Harry left theplanning meeting with a “dining”table for his room (that had beenstored in the basement) and wasgoing home to have supper in hisroom. The staff who support Harryhad committed to find a way forHarry to live only with people thathe chose (and liked). However,helping Harry move requires thatthe agency figure out the financesinvolved in closing the group home.While this will take time, in theinterim Harry will be happier andwill eat regularly.

Harry’s story also brings up an issueof health. Since Harry has no unusualmedical issues, skipping anoccasional meal is not a problem.The concern is that he would skipenough meals to unbalance hisnutrition and/or to cause him to losetoo much weight. Harry does nothave enough money to eat out all thetime and he does not eat with hisfriends every night. He was skippingenough meals to have a noticeableweight loss (although not enough toraise immediate health concerns).Neither depression nor an eatingdisorder seemed to be needed toexplain his not eating at home.Hating one of his roommates and

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having no alternative appeared tobe sufficient explanation. Eating inhis room is the temporary solution.He still eats out when he can afford itand he eats with friends andrelatives as often as he is invited.

A life that makes sense to theindividual. The desired outcome isa life that makes sense to theindividual. How each person wantsto live should be congruent with howthey are living. This does not meanthat everyone gets everything thatthey want. Some things are beyondour power to provide, some thingstake time, and some things costmore than we can afford. A woman Imet in Chicago told me that the onlyliving situation acceptable to herwas to live with her mother.Unfortunately, her mother made itclear that regardless of the supportsoffered she was not prepared for herdaughter to return home. To helpthis woman achieve a life that makessense we have to help her deal withthe loss of her home with her motherand to develop other relationships.

Many of those things that areimportant to people take time toachieve. For people living in groupsettings, the changes that arepossible will not work for everyone.

If you hate one ofyour roommates,not having to eat inthe same roomhelps. However, it does not addressthe underlying issue that you shouldbe able to pick whom you live with.Because sites are funded rather thanpeople, because having one or twopeople move may leave a deficit thatcannot be covered, helping peopleleave group settings takes time.Moving to a new place requires thatwe not only know how people wantto live but how we can pay for it.Where group homes are beingclosed, disposing of the buildingmay require significant effort.Helping people leave group homescan be done and should be done,but it does take time.

Many people say that they want tolive by themselves. This is therequest that most often challengesthe disability system. The easiestway to control costs is to share them.By requiring that people sharehousing and staff, costs are reduced.Where people live by themselvesthis economy is absent. If everyonewanted to live by themselves thedisability system would never beable to bear the cost. However, ifonly a small percent want to live by

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themselves at any one time it shouldbe affordable. Many people want totry living by themselves, but only afew people like it as a permanentway of life. Further, many peoplehave been forced to share their liveswith their roommates and need toexperience what just sharing spaceis like. (When you share lives you doeverything together, when you sharespace you sleep in the same houseand otherwise select what you dotogether. )

Home ownership is another exampleof something that appears too costly.The disability system has made itpossible for agencies to ownthousands of houses but sees homeownership for individuals as tooexpensive. It does take time,knowledge, and commitment butpeople across the United States andCanada are finding ways to buy theirown homes. It is only too costly whenit is seen as something which shouldbe solely financed by the disabilitysystem.

Home ownership is also an exampleof a dream. Whenever a dream forthe future is expressed there are afew questions that should be asked.The first question to ask is whosedream is this? Most people need tohave a life before they begin to have

dreams of things like owning theirown home. Check and see if it isreally their dream or is it the dreamthat the facilitator thought theyshould have. If it is their dream, doesit really need to happen tomorrow oris it something to work toward?Simple dreams like living only withpeople that I like, only beingsupported by people that I trust, orhaving privacy in the bathroom,should be achieved quickly.Expensive dreams, extraordinarydreams, which are the person’s andnot the product of a guided fantasy,become something that the personshould be supported in workingtoward.

Remember to keep listening.Whenever people are empowered, adynamic situation is created. Theprocess of listening and then actingon what has been heard is anongoing cycle. What people wanttoday will be different from whatthey want tomorrow. The process islifelong and interactive. The onlything worse than never listening isonly listening once. The processshould continuously loop back,comparing how people are livingwith how they want to live. Wherethere are differences a plan needs tobe developed to help the individualto continue the pursuit of happiness.

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Four of the reasons why changingto self-directed services is sodamned hard.

1. It requires that, during thechange, you run dual systems;and:• Dual systems result in people

“layering-on” paperrequirements.

• In the medium to long termyou cannot run dual systems –supporting people is anotherway of thinking, not justanother way of doing.

2. It requires new skills and newknowledge:• We treat the new skills as if

they were knowledge;• Acquiring new skills requires

mentoring/coaching;• In the absence of adequate

support people will revert towhat they know (do the oldprocess with new labels);

• Look for the naturals, supportthe learners, and cope withthose who have no talent; and

• Managers make decisionsbased on their personalknowledge, rooted in theirprior experiences –• Managers need enough

“new” experiences to haveenough new knowledge todevelop a “translationprogram” from the old tothe new; and

• Many managers weretrained in a “commandand control” theory ofmanagement and needassistance to transition intoa system of sharing powerand control.

3. It is about sharing power andcontrol and we have a systemwhere power and control aremore often accumulated thanshared:• At its core, it's about shifting

power and control to peoplewith disabilities and theirfamilies, but control is neverabsolute, it is about sharingpower and control;

Changing from Programsto Supportsby Michael W. Smull

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• For most people exercisingpositive power and controlrequires new knowledge, newskills;

• For most organizations sharingpower and control requiresnew policies and practices;and

• There are those who do notwant to share, the opposed.

4. We say it is about changingpractice, but it is even moreabout changing culture. Thosewho are successful:• Have a culture where

managers consistently view allissues/problems through thelens of helping people get thelives that they want, wherethey keep their “eye on theprize” -• In thinking, problem

solving,• That deals with

requirements, rules,regulations in a way thathelps keep people on theirjourney;

• Move from a passive“professionals know best”culture to an active,questioning, learning culture;

• Move from a blame culture toan accountability culture; and

• Create a culture of partnership,rooted in respect, and trust.

Developing strategies for change

1. Look for, create, and takeadvantage of opportunities toestablish best practice:• Best practice examples are a

necessary but insufficientingredient in a change strategy;

• Only doing best practice is thecontagion theory of change,change is produced but tooslowly; and

• Local best practice examplesdemonstrate that it can be donehere and produce a cleardestination of where you wantto go.

2. Find opportunities to makeincremental change in typicalpractice:• Create change “inside the box”

that demonstrates that –• Change is possible, gets

people comfortable withchange;

• That moves typical practicetoward best practice; and

• Be ready when a series ofincremental changes createsthe opportunity to establishbest practice.

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3. Seek ways to change theexpectations/creating positivepressure for change among keystakeholders regarding typicaland best practice:• The first requirement for

change is discontent, thesecond is pressure;

• Top down pressure is unevenand inconsistent;

• Pressure from self-advocatesand families can be moreconstant and consistent; and

• Where there is top downsupport, create pressure fromthose who do the day to daysupport.

Implementing changeThose who are seeking pervasivechange need to remember:

• Look for opportunities whereyou can start with success;

• Start where the people whoare doing the work are;

• Start with listening andobserving to see wherepeople and organizations arein practice, in behavior, inorganizational culture – notjust in rhetoric;

• Always look for opportunitiesfor best practice whileremembering that change“inside the box” helps people

become comfortable withchange and feel empowered sothat change “outside the box”is easier to achieve; and

• Change strategies that aremore ambitious than theresources to support them failand in their failure confirm thecynics who are saying that thisis just a fad.

1. Look for the opportunities toinitiate and support efforts tochange organizational culture sothat –

➢ Leaders/managers consistentlyview all issues/problems throughthe lens of helping people get thelives that they want:♦ Remember that this is a part of

culture, that you are changingan organizational “habit”-♦ Changing a habit requires

consistent efforts wherethose who participate canremind the leader of thediscussion when there is a“lapse;”

♦ Finding solutions that reflectwhat is important to peopleand address the specificproblem may requireincreased problem solvingskills (a training/mentoringissue);

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♦ Also remember that you arelooking for the best outcomebut occasionally need to settlefor the “least evil” outcome;and

♦ Where you settle for a leastevil solution you also need tolet those affected know whatyou are doing and lobby forchange.

➢ Change the planning process toestablish/support a learningculture:♦ Lay the foundation for a

learning culture, train thosewho will implement in theprinciples of the planning andlearning before you start toplan;

♦ Start with simple plans thatestablish a framework forlearning;

♦ Turn the learning wheel –♦ The person and those who

spend time with the personshould note what they arelearning;

♦ Provide organized time forreflection;

♦ Have the professionalspractice their new roles asconsultants, synthesizers,and facilitators (who helpdeepen understanding,

suggest new ways tounderstand, and solicit/suggest new things to try);

♦ Continuously teach personcentered thinking – look forand use the “teaching”moments;

♦ Develop the skills neededwhen what is being donedoesn’t work, e.g., coping withrisk, finding new ways tounderstand behavior, definingresponsibilities;

♦ While helping people getwhat is important in everydaylife look for, build and makeuse of opportunities to helppeople be connected to theircommunities.

➢ Go from blame to accountability:♦ Understand the problems and

pervasiveness of a blameculture;♦ There is no creativity in a

blame culture;♦ In a blame culture

responsibility is to beavoided, not accepted.

➢ Build respect, trust, andpartnership:♦ Blending what the Gallup

organization learned withperson centered planning;

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♦ It starts with who you select todo the work;

♦ Matching talents with jobs,learning who should workwith whom;

♦ How to keep the people youwant; and

♦ Measuring respect, trust, andpartnership and acting onwhat you learn – an exerciseand a process.

2. Look through the attached listfor (Measuring the Strength of aWorkplace) opportunities forchange. Rate the opportunitiesbased on –♦ Effort required (organizational

readiness, ease of change);♦ Talents of those who would

lead the effort (naturals,learners, untalented,opposed); and

♦ Potential gain.

Sustaining change

✓ Helping managers have thecontext –• Spending time with one or

two individuals who aremoving from programs tosupports; and

• Helping them to stay ontheir journey, turning thelearning wheel;

✓ Establish a forum wheremanagers reflect on what isbeing learned and developinterventions/supports toovercome obstacles and sustainchange.

✓ Those who participate –• Must meet regularly;• See it as a time to reflect and

problem solve (not a time todo crisis management);

• Have the support necessaryfor success (they mayrequire an outsidefacilitator);

• Have a process where theyreflect on the success anddifficulties and ask whateach suggests about issueswith -

♦ Knowledge and skills/competencies;

♦ Policies, structures,rules, management;

♦ Organizational culture;and

♦ Organizationalchange.

• Based on what they havelearned, designinterventions whilesupporting success;

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✓ Remember that they and theorganization must build andcelebrate short termsuccesses and haveopportunities for renewal.

Measuring the strength of aworkplace*, 12 questions thatmeasure the core elements neededto attract focus and keep the mosttalented employees. (Questions inbold are the most stronglycorrelated with retention.)

1. Do I know what is expectedof me at work?

2. Do I have the materials andequipment needed to do mywork right?

3. At work, do I have theopportunity to do what I dobest every day?

4. In the last seven days, haveI received recognition orpraise for good work?

5. Does my supervisor, orsomeone at work, seem tocare about me as a person?

6. Is there someone at workwho encourages mydevelopment?

7. At work, do my opinionsseem to count?

8. Does the mission/purpose ofmy company make me feellike my work is important?

9. Are my co-workerscommitted to doing qualitywork?

10. Do I have a best friend atwork?

11. In the last six month, have Italked with someone aboutmy progress?

12. At work have I had anopportunity to learn andgrow?

*Buckingham & Coffman, First, break

all the rules (1999) pg 28, 33.

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As self-determination and individualfunding spread people are lookingat the roles of those who have beentraditionally known as casemanagers or service coordinators.The expectations that many had ofservice coordinators in the late 70sand early 80s has been buried inincreasing numbers of people tosupport and endless paper tocomplete. As we change fromservice coordinators to supportbrokers (or whatever new label isadopted) we have the danger of justchanging the labels withoutchanging what happens. Unlessmanagers change (and those whofund support) the underlyingstructures, including reducing thevolume of paper and numbers ofpeople each support broker workswith, the changes in the roles andexpectations are doomed. Realchange needs to begin with anunderstanding of the desiredoutcomes and then developing thestructures to support it. We need tobegin by asking what do supportbrokers need to know and do?

I could say that the support broker’sjob is to help people have their ownlives where they are supported byand contribute to their communities.While this is true it is also too glib.“Sound-bite” advice is often a goodway to help people remembercomplex ideas but the ideas have tobe explained first. If I had theopportunity to briefly explain what Imeant I would talk about roles andresponsibilities mixed with values,gifts, and talents.

Its about partnershipAt its core, the work of a supportbroker requires partnership andpartnership is built on a foundationof respect and trust. Unless peoplewith disabilities and their familiesfeel respected, the trust needed toshare what is important and to takethe risks inherent in growth will beabsent. Without trust there will be nopartnerships. Real success is easierwith (and usually requires) a seriesof interlocking partnerships.

Thinking About the Rolesof the Support Brokerby Michael W. Smull

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Partnerships are needed betweenpeople with disabilities, theirfamilies, those who provide thesupport, and those who do theplanning and funding. All of thesepartnerships require effort toestablish and maintain. Some ofwhat follows begins to describewhat is necessary to create andsustain them.

It begins with listeningEverybody involved in these effortsmust feel that they were listened to.There is often compromise andpeople who disagree, but everyonemust feel that the plan facilitatorlistened to them. While everyonehas ideas and importantcontributions to make, thoselistening must keep in mind that theperson is the expert. They need tolisten to what the person says withwords and behavior about how theywant to live and act on what they say.They have to be careful todistinguish between what the personwants and what others want for theperson. And they need tounderstand that what someone asksfor may be limited by what theyhave tried. What someone is sayingthat they want is based, in part, ontheir experiences. People need

opportunities to try things to see ifthey will like them.

After the person, the most importantpeople to listen to are familymembers. In many instances theywere the only advocates who werepresent before the support brokermet the person and the areadvocates who will be there after thesupport broker is gone. Part of therole of the support broker is to helpto maintain and enhance theirrelationships with the person as partof their work in representing theperson. They need to understandand take into account the family’sperspective. Where what familymember’s want for the person isdifferent from what the person wantsfor themselves they need tounderstand why. Where there aredifferences that are substantial theyneed to negotiate a compromise thatmaintains the relationships whilecreating a balance that works for theperson. While there are notableexceptions, remember that amongthe things that most people want andneed are continued goodrelationships with their family.

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Plans as frameworks for learningThe plan that is developed with theperson is where many of theseefforts come together and arereflected. A plan should begin withrecording the learning that resultedfrom listening and then describewhat will be done to act on what waslearned. The plan should -

• Reflect what is important tothe person;

• Describe a balance betweenwhat is important and anyissues of health and safety;and

• Make clear the responsibilitiesof those who support theperson in moving toward theirdesired life.

The plan should describe thedirection of the journey (and thedestinations along the way).However, learning is continuous andmust be done in partnership, if it isto be used to help the personcontinue to move toward theirdesired life within their community.Plans should provide a frameworkfor recording the on-going learningthat takes place and describe whatwill be done that reflects thelearning.

Helping find a balanceFew people (regardless of thepresence or absence of disabilitylabels) have a perfect life. What weall seek is a life that has a balancethat we see as positive. The supportbroker’ job can be seen ascontinuously seeking a balance thatworks for the person, a balancebetween what is important to theperson and what is important tothose who know and care, betweenwhat is important to the person andany issues of health and safety.Remember that this is a journey, notan event. The best outcome, the bestbalance that can be achieved todayis the starting point. As the persongrows and changes, as otherperceptions of the person change, asour understanding deepens,opportunities for a better balancearise. Self-determination is notabout a single effort; it is aboutpushing for the best immediateoutcome, looking for newopportunities, and continuing tolisten to the person. In seeking abalance that works for the personthe order in which you answerquestions matters. Learn howsomebody wants to live before youlook at where. Learn what wouldmake the person happy and thenlearn how the person can be healthy

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and safe within the context of beinghappy.

It is about control and seeingpossibilitiesSupport brokers have to be able todo individual budgets. It is aboutmoney and how it will be spent, butmoney is only where it starts. It isreally about control. If people canuse and move their public dollars asmakes sense to them they are morelikely to be listened to and achieve abalance that makes sense. Doing thisrequires that you see the publicfinding as not just a way to buyservices but also as leverage. It isclearly and importantly a way toleverage changes in the servicesavailable. However, with enoughflexibility in how the money is spentit is also leverage in buildingcommunity. Some of this is bypaying people to “bridge” orconnect”. There are also people injobs where co-workers are paid toprovide the needed support. But itall starts with being able to seepossibilities. The best supportbrokers are not to be trapped bywhat is, they lead a process wherepeople go beyond the boundaries ofthe system and see the possibilitiesin the community.

It is not about doing all of thework, its still about partnershipThe reader’s response to this list ofresponsibilities and activities maywell be “this is what we should dobut that we will never be able toafford it”. If the support broker isthe one to do all of this it is true, it isunlikely that there will be thefunding to have the enough supportbrokers. Central to making thishappen is to return to the idea ofpartnerships. If the work is done inpartnership, then the broker doesnot have to be the person doing itall. With support, there are familiesand service providers who aredeveloping superb plans. There areself-advocates who are developingtheir own plans. On-going,continuous learning is essential tosuccess and can only happen inpartnership. Much of the creativethinking (and learning) abouthelping people be part of theircommunities is happening insideexisting services. The supportbroker’s role is to look foropportunities to develop productivepartnerships, to help define theroles of the partners, and then tomake sure that the important work inbuilding a life with each person ishappening.

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People are more likely to get lives(and the system) changed –

If the people supported (and theirfamilies):

• Know what is important tothem;

• Know what is conceivable,what others have done, in thissense know what is possible;

• Have substantial control overthe public resources availableto make it happen; and

• Feel that they are respectedand trusted and have apartnership with those whoplan, manage, and support.

If the leaders and managers:

• Believe that people withdisabilities should havepositive control over theirlives and should be part oftheir communities;

• Are committed to do whateverit takes;

• Understand that it is aboutchanging how we think andact more than changing howwe plan;

• Support everyone inacquiring the neededknowledge and skills;

• Create and support a cultureof learning, accountability,and partnership; and

• Have the skills necessary tobe good managers.

If those who license, inspect, andotherwise hold the systemaccountable:

• Look for outcomes rather thanprocess;

• Understand that change ismessy and distinguishbetween the messiness ofchange and the absence ofacceptable outcomes;

• Require accountability whileavoiding blame; and

• While they inspect they alsoconsult.

Some Characteristics of aSystem of Supportby Michael W. Smull

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Those who actually see people andtheir services need to be sufficientlyknowledgeable about personcentered plans and theimplementation of plans, to be ableto meet a person and determine ifthe plan –

• Reflects what is important tothe person;

• describes a balance betweenwhat is important and anyissues of health and safety;

• makes clear theresponsibilities of those whosupport the person in movingtoward their desired life;

• is providing services andsupports to help the personmove toward the life that he orshe wants; and

• Expects that public resourceswill be used to help theperson move toward his or herdesired life while maintainingthe balance described.

If those who are to do the day today implementation:

• Understand what they aredoing and how –

• Their work is aboutsupporting people and notabout fixing disabilities;

• The people they supporthave ways in which they aresmart, have gifts, and haveimportant ways in whichthey can contribute;

• The contributions that thepeople that they supportcan make to theircommunities are importantto having healthycommunities;

• Are active participants indeveloping the plan, thelearning between plans, andin each of the subsequentplans;

• Are acknowledged for theiron-going contributions;

• Have the formal and informaltimes where they participatein the on-going learning –

• Sharing what each haslearned;

• Reflecting on what hasworked;

• Figuring out what to donext;

• Celebrating success; and• Feel that they are respected

and trusted, and have apartnership with thosesupported and those whosupervise.

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If the plans –

• Provide a framework forlearning, acting andreflecting;

• Reflect what is important tothe person and describe whatothers need to know or do tohave a reasonable balancebetween/among anycompeting pressures –

• Between happy and safe/healthy

• Between what the personwants and what others wantfor the person

• Between what the personwants and available publicresources;

• Are accessible (easy to read/user friendly);

• Are helpful to those whoimplement;

• Reflect what actually happensin the support that the persongets;

• Are the place to record what islearned day to day (written onby those who do the work asthey learn);

• Clearly and simply describethe roles and responsibilitiesof those paid to support; and

• Are developed in a respectfulprocess where the person

being planned with and thosewho provide support feelsthat they were listened to.

If the planner/facilitator keeps theprocess alive by considering theissues of the person, and theresources available for support andthe goal of helping each person be apart of their community. Then,starting where the person is, with apace that reflects the opportunitiesand resources –

• Helps the person get what isimportant in everyday life;

• Using what has been learnedabout what is important, helpsthe person to be welcomed byand connected to theircommunity;

• Using the resultingassociations, looks foropportunities to buildrelationships;

• Uses the relationships to builda circle of support; and

• All of this is done with theperson and results in anongoing, evolving vision ofdesired future

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If all of this happens where effortsare made to build –

• A learning culture;• A culture that moves from

blame to accountability;• A culture of partnership built

on a foundation of respect andtrust; and

• Having all of these present atthe same time isextraordinarily rare and thatnot all of them need to bepresent to have plansimplemented.

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The articles that form the core of thisissue were reviewed through thelens of my current experiences withthe service system for adults withdisabilities. My reactions reflectwhat I have been learning from thepeople I plan with and those whosupport them. The adult servicesystem is talking about rapid changewhile engaging in glacial change. Itembraces the language of each newtrend while largely maintaining itsold practices. However, if as Kantorsuggests, a key requirement forchange is dissatisfaction, it is asystem that is overdue for change(Kantor, Stein & Jick, 1992).

In embracing the language of self-determination the readinessdiscussed sounds remarkably likethe readiness aboutdeinstitutionalization twenty-fiveyears ago. In the early 1970s thepeople who lived in institutions werediscussed as being divided amongthose who were ready and those whowere not ready for life in their

communities. As self-determinationis currently being discussed in mostcommunities, people are talkingabout it from a readinessperspective, as something forarticulate self-advocates butcertainly not something for peoplewho have severe cognitiveimpairments and do not use wordsto communicate. While the authorsof the core articles are not talking ofreadiness neither have thediscussions matured to the pointwhere we are also talking aboutbuilding community capacities, ofhelping our communities be ready.Despite the absence of pervasiverecognition of where the onus fordevelopment lies, self-determinationis happening with people withsevere disabilities in scatteredplaces across the United States, theUnited Kingdom, and Canada.

As noted by Wehmeyer (1998), theroots of self-determination can befound in the principles ofnormalization as articulated by Nirje

Some Thoughts from the Field:Invited Commentary onArticles on Self-Determinationby Michael W. Smull (from Impact)

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(1969). However, despite Nirjeísarticulate call, normalization haslargely happened inside programs.Those who plan and manage startwith what is wrong with the personand then they place people in aprogram that matches the disability.It is only after they have placed theperson that efforts may be made tohelp the person have more control.Therefore the changes that we needare larger than those most systemshave either made or anticipate.Further, with today’s concerns aboutthe effects of managed care, self-determination clearly provides thebest alternative (Nerney & Shumway,1996). Among the lessons that I havelearned from those who arestruggling to make self-determination a reality for peoplewith severe disabilities are that:

• The first ‘assessment’ is tolisten to the people who arebeing supported and to learnwhat those who love theperson already know;

• Self determination is aboutcontrol but it is also aboutpartnership and struggle;

• Having self-determinationbecome the dominate

paradigm in our servicesystem requires that wechange more than practice, itrequires changes in thinking,values, culture and support;and

• If self-determination is foreveryone what is written aboutit has to be accessible toeveryone.

1. The first assessment is to listento the people who are beingsupported and to learn what thosewho love the person already knowFor any one who lacks substantialcontrol over their life self-determination begins when peoplelisten to what they are saying abouthow they want to live and then act onwhat they hear. For people withsevere disabilities who do notcommunicate in traditional ways thefirst assessment is to listen to thebehavior of the person and to gatherthe knowledge that those who lovethem have. The experiences of thoseof us who do planning is that wherethere are individuals in the person’slife who love them, much of what isimportant to the person is known butnot recognized. The individuals wholove the person may or may not berelated and they may or may not be

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paid. What they have in common isthat they have a personalrelationship with the person, spendtime with the person, pay closeattention to how the personresponds to what is being done andthus learn what is important to theperson. Part of what is new in self-determination is that we arelistening to people to whom we havetraditionally given instructions.Where they are paid they are paidthe least. They are the individualswho help people with severedisabilities eat, get dressed, andhave fun. Because they are rarelylistened to and because what theyhave to say is almost neversystematically collected theresulting collective wisdom is oftengreater than anyone was aware of.

Once this collective wisdom isgathered and organized the peoplewho know and care about the personare asked to compare what has beenlearned about what is important tothe person with what is happening inthe person’s life. They are asked tothink about what needs to bemaintained and what needs tochange. They are asked to reflect onwhat else should be learned. Theresulting plan initiates a learningcircle (Senge, 1990; Handy, 1994).

The circle begins with listening andunderstanding (Greenleaf, 1977),continues with planning and actingon that plan, and closes the circlewith reflection and more listening.Those who are involved with theperson are challenged to enter intoa partnership of active dialogue andstruggle.

It is in this context that formalteaching strategies and formalassessments can provide invaluableassistance. Any time we listen andact on what we hear we have createda context in which communicationwill become more effective.However, as we seek to help peoplebe a part of their communities weshould also look for ways make iteasier for them to communicate withpeople who do not know them aswell. We should look for ways ofcommunicating that they might liketo use and that people in thecommunity will easily grasp. Whereit is not clear what the person enjoysor where they only have a few thingsthat they like, a formal assessmentorganizes our efforts and makes itmore likely that we will learn aboutwhat their preferences are. Thedanger is having the assessmentstake control over what happens inthe person’s life rather than their

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being seen as just another way oflistening and of helping the personto learn. However, the danger inemphasizing a more informalapproach is that pointed out byBrown et. al. (1998), that we willmake assumptions about meaningsthat are not correct. We will projectour meanings on to those of theperson and the ‘voice’ of the personwill be lost.

We need to strike a balance. Weneed to guard against reinforcingthe image of the person as brokenwith assessments as a way ofdefining what is wrong and teachingstrategies as a way to fix them. Thevoice of the person must be in theforeground. Assessments should beseen as another way of listening andunderstanding the person. As issuggested in the articles reviewed,teaching strategies and goals needto be linked to what the personmight like to learn and have abenefit that the person sees. Forself-determination to become areality for people with severedisabilities, those who developeducation or support plans need tobecome skilled at listening and tosee the need to listen on acontinuous basis rather than as anannual event.

2. Self determination is aboutcontrol but it is also aboutpartnership and struggle.For all of us control and choice are atthe core of self-determination butcontrol is always shared and choiceoccurs inside boundaries. Living ininterdependence means that whatwe want must be balanced againstwhat others want. Everyone also hasmutually exclusive desires (e.g. tobe rich and work in human services)between which we need to find abalance. All of us have boundariesimposed by society’s rules, ourresources, and the resources of ourfamilies and communities. Thechallenge in self-determination forpeople with severe disabilities ishow we share control, struggle withwhere the boundaries are (breakingthrough the artificial boundaries ofthe disability system), and seek anoutcome that reflects a balance thatworks for the person. One sign ofsuccess would be the end ofplacement. People would no longerbe placed. We will learn how peoplewant to live before we talk with themabout where.

When we are supporting peoplewho are not articulate self-advocates, who do not use words totalk and who need extensive

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physical assistance the challengesincrease. We are challenged to‘listen’ so that we are hearing thevoice of the person and not ourvoice speaking for the person. Wehave to try things and see whathappens. We have to balancedesires, risks, and resources with theperson. For all of us, what we want isshaped by what we have known,what we have experienced. Forpeople who have had few lifeexperiences, we have to think ofwhat new opportunities they mighttry. When we have concernsbecause someone hurts themselvesor others, we have to try tounderstand why this happens. Onedifference is where we start. Wehave to start with understanding hownot being listened to for decadescan effect behavior. We have to startwith the assumption that acting onwhat we hear will change thebehavior. If we are committed todoing this over time with the personthen there is partnership as well asstruggle. Denise’s story in thearticle by Bambara, Cole, andKroger (1998) is an excellentexample of both partnership andstruggle. By listening to Denise theystruggled with (not against her) tohelp her have control. They usedtheir skills and understanding to

listen to what Denise was saying andonly after they began to understanddid they apply their other skills tohelp Denise learn and grow. Withinthis framework Denise providedcontinuous feedback which wasused to correct the course that theywere taking together. The ways inwhich she communicated reflectedher wounds from her past andinstead of simply trying to ‘fix’ herthey struggled in partnership withher. They showed understandingand compassion as they werehelping her develop less painfulways of telling us what she wants.

When we continuously listen and acton what we hear there is apartnership and control is shared.We must struggle to have the voiceand the desires of the person in theforefront while also encouraginggrowth and addressing any issues ofheath or safety. We will have tocontinuously ask questions such as:What is the person telling us withtheir behavior? If what we think theperson is saying is true, how will weknow, how will the person tell us? Ifthe person wants a change how willwe know? Given what the personlikes now what would make sense forthem to try next? In helping them trynew things, where is the line between

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encouragement and coercion? Whatcould they learn that would help themget more of what they want and wouldthey like to learn it?

3. Having self-determinationbecome the dominate paradigmin our service system requiresthat we change more thanpractice, it requires changes inthinking, values, culture andsupport.One of the myths in self-determination is that it is just achange in practice. Making self-determination real requires changesin thinking, in values, and in culture.Sharing control with the people wesupport, having a culture of respectand trust, and operating throughpartnerships are all the exceptionsand must become the norm. Wehave to stop being the experts andbegin to see each person as the realexpert in their own life. We havestop telling people how they will liveand what they will do based on ourformal assessments and learn newways of listening. As we help peoplewith severe disabilities have theirown lives we have to learn to listenmore to the people who spend timewith the person. We have torecognize that we are asking peopleto acquire new skills, that learning to

listen and learning to share controlwill take time and require support.

Wherever people with disabilitiesneed support, we need a culture ofrespect, trust, and partnership.Unless people with disabilities andtheir families feel respected thetrust needed to share what isimportant and to take the risksinherent in growth will be absent.Without trust there will be nopartnerships. Without a series ofinterlocking partnerships betweenpeople with disabilities, theirfamilies, those who provide thesupport, and those who pay it willnot be possible to provide supportsto all of those who want them norwill it be possible to buildcommunity.

Unless the people who provide thedirect support feel respected theywill not be respectful of the peoplethey support. Unless they aretrusted they will not will not beempowered to provide the flexiblesupport that is needed. At the sametime, increasing the trust placed inthe people who provide the directsupport increases the need to knowwho is being trusted and to establishclear expectations and boundaries(Handy, 1995; Smull, 1997).

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Respect begins with listening,everyone must feel that they wereheard. Trust is built on acting onwhat was heard, on honest promisesabout what will and will not be done,what will and will not be attempted.Trust comes from seeing actionstaken and from honestacknowledgment of what we do notknow. Partnerships arise fromshared responsibility, sharedstruggle, and shared actions.Everyone must understand what isbeing done and why. Everyone mustfeel included. Respect, trust, andpartnership are linked, each to thenext. When I ask people withdisabilities, their families, and thosewho do the day to day work ofsupport whether or not respect,trust, and partnership are presentthe answer is typically no. Each ofthese needs to be consciously builtinto the processes by which weassess, plan, and act.

Whenever people are in paidservices the challenges arecompounded by the issues aroundcontrol of the funding. People withdisabilities get trapped by fundingpackages and staffing ratios. Forexample, the first response tohearing that someone dislikes whothey live with is that we cannot afford

for that person to leave and taketheir money with them. Those whoare paid to support need assistancein thinking beyond the traditionalprogram response and need anincentive to learn new ways ofthinking. Change will not occurwithout pressure, without what Kotter(1996) refers to as a sense ofurgency. For many who provideservices that pressure will onlycome when those who get servicesnot only know what they want andwhat is possible, but have sufficientcontrol over the funding to take theirmoney elsewhere when they aredissatisfied.

Finally, if self-determination is tobecome the norm we need torecognize that it requires new skillsand that learning those skills takestime and support. When I ask those Ivisit about person centeredplanning I often hear that they havebeen doing it for years. When Iobserve what is happening I see theold practices dressed in newrhetoric. Learning to listen and acton what is heard is a skill and it isnot in common use. The teachingstrategies most needed are not forthose with disabilities but for thepeople who assess, plan, andsupport. They need to have

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opportunities to learn new ways of:listening; understanding what theyheard; and communicating it toothers. While there are somenotable efforts to producedescriptions of the currentsprocesses more efforts are neededand research on their efficacy isabsent (Sanderson, et. al.1997,O’Brien & Lovett, 1992).

4. If self-determination is foreveryone then what is writtenabout it has to be accessible toeveryone.If self-determination is to be thenorm, the people who receiveservices, their families, and thosewho support them need tounderstand what is being writtenabout how to implement it. This is achallenge when writing forpublication and runs counter to thetraining that most people have.Those who truly wish to see peoplewith disabilities have control muststrive to write so that those withoutgraduate educations will understandwhat is written. Research resultsneed to be presented in a manneraccessible to those who canimplement what was learned. Eachnew technique, assessment, orprocess needs to be evaluated todetermine how it can be

implemented in a world withoutgraduate students as resources.Research needs to focus as much onat how the system and itsorganizations need to change asthey do on how we need to changeour practice in supportingindividuals.

Kensington, MDJanuary, 1998

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References

Bambara, L., Cole, C., Koger, F. (1998)Translating self-determination conceptsinto supports for adults with severedisabilities. Journal of the associationfor people with severe handicaps (inpress).

Brown, F., Gothelf, C., Guess, D., Lehr, D.(1998) Self-determination forindividuals with the most severedisabilities: moving beyond chimera.Journal of the association for personswith severe handicaps (in press).

Greenleaf, R. (1977) Servant leadership.(pp. 16-17) NY,NY: Paulist Press.

Handy, C. (1995) Trust and the virtualorganization. Harvard Business Review,May-June 95, 40-50.

Handy, C (1994) Managing the dream.(pp. 48-49) In S. Chawla & J. Rensch(Eds.) Learning organizations:developing cultures for tomorrowísworkplace. Portland, OR: ProductivityPress.

Kantor, R., Stein, B., & Jick, T. (1992). Thechallenge of organizational change,how companies experience it and howleaders guide it. (p. 379) NY, NY: FreePress.

Kotter, J. (1996) Leading change. (pp.35-50) Boston, MA: Harvard BusinessSchool Press.

Nerney, T. & Shumway, D. (1996). Beyondmanaged care: self-determination forpeople with disabilities. Durham, NH:University of New Hampshire.

Nirje, B. (1969) The normalizationprinciple and its human managementimplications. In Kugel, R. &Wolfensberger, W. (Eds.) Changingpatterns in residential services (pp.181-195). Washington, DC: PresidentísCommittee on Mental Retardation.

OíBrien, J. & Lovett H. (1992). Finding away toward everyday lives: thecontribution of person centeredplanning. Harrisburg, PA: PennsylvaniaOffice of Mental Retardation.

Sanderson, H., Kennedy, J, and Ritchie, P.(1997). People, plans and possibilities:exploring person centered planningEdinburgh, UK: SHS Ltd.

Senge, P. (1990). (Pp. 73-78) The fifthdiscipline: the arts and practice of thelearning organization. NY,NY: DoubleDay.

Smull, M. (1997 May/June). Helpingstaff support choice. AAMR News andNotes, 10, p. 8 Wehmeyer, M. (1998).Self-determination and individuals withsignificant disabilities: examiningmeaning and misinterpretation. Journalof the association for people withsevere handicaps. (In press).

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Listen, Learn, Act

Selected Writings by Michael W. Smullon Essential Lifestyle Planning,

Self-Determination, andOrganizational Change