What's Worth Working For? - Inclusion Pressinclusion.com/downloads/obrienarchive/System Change and Leadership... · What's worth working for? / 2 Thanks to Connie Lyle O'Brien, David

What's Worth Working For?

Leadership for Better Quality Human Services

John O'Brien

58 Willowick Drive • Lithonia, Georgia • 30038(404) 987-9785

Responsive Systems Associates

© 1989

What's worth working for? / 2

Thanks to Connie Lyle O'Brien, David Goode, Zana Lutfiyya, JackPealer, Steve Taylor & Alan Tyne for comments on this paper.

A somewhat different version of this paper is published in V. Bradley &H. Bersani (eds.), (1989). Improving the quality of services for peoplewith developmental disabilities: It's everybody's business. Baltimore:Paul Brookes.

Preparation of this paper was supported through a subcontractfrom The Center on Human Policy, Syracuse University for theResearch & Training Center on Community Living. The Research& Training Center on Community living is supported through acooperative agreement (Number H133B80048) between theNational Institute on Disability & Rehabilitation Research(NIDRR) and the University of Minnesota Institute on CommunityIntegration. Members of the Center are encouraged to expresstheir opinions; these do not necessarily represent the officialposition of NIDRR.


Brian and his family rely on their community's humanservices because of his severe disability. Brian’s recentexperiences illustrate the kind of human service decisionsthat make a difference in the lives of the people involved.

Brian works in a restaurant cleaning the dining room,stocking the salad bar, and assisting with food preparation. Atage 26, it is his first job. His mother says, “He was proud to get aname tag. He is most proud of the idea that he works like every-body else.” His co-workers say he enjoys being part of theirgroup. His employer says he does a good job, most of the time.Brian says very little, but most work days he gets up withoutdifficulty and much of the time he does his tasks willingly andcapably.

Group home staff recognize that difficult behavior, whichled to his institutionalization and has frustrated their efforts atbehavior management, happens less frequently since he has beenworking. His job coach notices that Brian seldom bites himself,swears loudly, or sucks his thumb at work and thinks it is mostlybecause of the influence of his co-workers and his interest in hisjob.

Brian is not cured. He still has significant difficulty withself control and he continues to need some extra help from hissupervisor, some extra help from his co-workers, and someassistance from his job coach. He still has difficult times at thegroup home. If he lost his job, he would need a great deal of helpto find another one.

Brian does have more satisfying days, the opportunity to bepart of a work group, the chance to learn new things and earn awage, and the status of being a worker. Those close to him have arenewed sense of a positive future for him. As his mother says,“Every year we think he has come to his full potential and hekeeps on going.” (adapted from Guy, Scott, Hasazi, & Patten,1989, p. 10)

Decisions that make apositive difference

Introduction


Brian changes because the service providers andpolicy makers he relies on have changed their thinking,their policies, and their practices. Because they resolved tomake community living possible for everyone, regardless ofthe extent of disability, Brian returned from the institutionto his home community. Because they discarded the un-helpful idea that Brian was not ready to work until hisbehavior was under control, he has a job. Because theyhave learned to develop individual jobs that offer theopportunity to be part of a work group, Brian spends hiswork hours and his break times with people who are notdisabled in an ordinary restaurant near where he lives.Because they recognize that he might want or need tochange jobs, they want to maintain the capacity to supporthim as his circumstances change. His struggle for effectivecommunication and self-control continues, but now in thecontext of greater participation in community life. Withcooperation from the other people he relies on, his lifechanges, mostly for the better, a step at a time. His mother’slife improves. And there are small, mostly positive changesfor his employer and co-workers as they get to know Brian.And service staff have more demanding and satisfying jobs.

The designers and providers of human servicesaffect the daily experiences and the future prospects of thepeople, families, and communities who rely on them. Theirpolicies and daily practice influence…

✓ where a person who depends on services lives, learns,works, and plays

✓ what activities fill the person’s days

✓ who the person gets to know and where the personbelongs

Jobs; not "getting ready"

Community living for everyone

Support to fit changingindividual needs

Services shape people'sexperience of community life


✓ the way the person and others understand who theperson is

When someone depends on services for housing, necessarypersonal assistance, and daily occupation over a longperiod, as many people with severe disabilities do, servicesbecome life defining.

The fundamental question for those concerned withhigh quality services for people with severe disabilities is,

How can we use our resourcesto assist the people who rely on us

to live better lives?

As Brian’s mother reminds us, the notion of a better life isnecessarily ambiguous. Because he gets help that is respon-sive to his interests and needs, Brian keeps outgrowingother people’s ideas of what a good life for him will be.

Openness to the question of how to mobilizeresources to assist better lives causes uneasiness. Humanservice organizations can’t manufacture better lives. Peopleweave better lives from the resources afforded by individ-ual effort, personal relationships, available opportunities,and help from services. So the outcomes of service topeople with severe disabilities arise from collaborationbetween the person, family and friends, neighbors, class-mates, co-workers, employers, and service providers.Frustration awaits those who desire both control of neces-sary services through quantifiable objectives, standardprocedures, and well defined lines of accountability andassistance toward better lives for people.

Engagement with the question of how to assistpeople to live better lives increases uncertainty, the possi-bility of conflict, and the demand for change. But respon-sible policy makers and practitioners won’t try to dodge thequestion by reducing the pursuit of service quality toconformity with external standards and regulations or byretreating into arguments about the impossibility of doinganything until science produces objective measures of

Leadership for Quality

The question

Engaging ambiguity


“better lives.” Avoiding the question reduces decisionmakers discomfort, but at the cost of denying the linksbetween service practice and the realities of life for peoplewith disabilities, their families, and community members.Such denial cuts off policy makers and practitioners fromessential information, reduces their options for effectiveaction, and compromises the integrity of their efforts byshifting the whole burden of change to the person with asevere disability.

The question of how to assist better lives tests andbuilds leadership. Leadership means mobilizing people’sresources to make progress on difficult problems(Heifetz & Sinder, 1988):

• Problems for which definitions must be negotiatedamong people with different understandings

• Problems for which responses must be invented ratherthan simply selected from a menu of proven solutions

• Problems which the people involved feel pressure toavoid because making progress implies personal, organ-izational, and social learning and change.

Leadership does not flow from a position on the organiza-tion chart or an expression of personal charisma. Anyoneleads when performing the activities that enable people toface and deal with the complex situations that arise when aservice organization works to learn how to assist people tomake better lives for themselves.

This paper discusses three activities of leadership forimproved service quality. First, shaping direction throughvision. Second, identifying distinctive contributions byclarifying legitimate purposes of services for people whoneed long term assistance. And, third, guiding daily workon problems by defining the accomplishments of effectiveservices.

Leadership is…

…working on difficult problems

Activity, not position


Vision animates and directs people’s action towarda desirable future that is unlikely to happen without effortand learning. Vision describes the community circum-stances in which people with disabilities can lead betterlives. Judith Snow (1987, p. 1) speaks powerfully to manyconcerned people:

In order to create or expand the capacity of commu-nities to respond to their own members, it is clearthat a fundamental activity of change is to welcomepeople with disabilities into ordinary, rich networksof relationship. To achieve such a welcome, disabil-ity and those who carry it must be seen as lessthreatening and burdensome, if not in fact as un-usual gifts to the broader social structure. Peoplemust see that disability does not have to be fixed orcured, but accepted and challenged. The individualmust be welcomed, celebrated and listened to,challenged and supported in every environment todevelop every talent that he or she potentially has,just as ordinary people should be. His or her contri-butions must be facilitated and used for the benefitof the wider group. In short, every citizen must bean ordinary citizen.

This paper follows Judith Snow in seeking a vision ofinclusive community. A vision of inclusive commmunitypoints in a different direction than a vision of humanservices that meet all needs within their buildings andboundaries would. The search for the excellent self-contained service program leaves people wandering in ablind alley; while the search for ways to build more inclu-sive community directs attention to the network of streetsand roads that can lead to opportunities for better lives foreveryone (McKnight, 1987).

Expressions of vision arise from careful listeningand thoughtful reflection on the experience and interests ofthe people concerned. Vision energizes by creating tensionwith current reality; it communicates how the people

A Vision of Inclusive Community

Vision arises from listening


involved want things to be different. Statements of visionfeel right and vital to the people concerned, even if theymay seem strange, impractical, or even foolish to others.Vision can be chosen, but it cannot be coerced. Peopledon’t finish with a vision; rather, as they work toward it,their appreciation of its meaning deepens and the words andsymbols that communicate it grow richer and clearer.

A human service organization whose membersdiscover and commit themselves to a common vision ofinclusive community has an alternative to bureaucraticcontrol mechanisms. People with a common vision have asense of direction. They find it easier to face difficultsituations, cooperate, deal with conflicts, create innova-tions, and stick with their work when things get difficultthan people controlled only by hierarchial relationships do.(Bennis & Nanus, 1985).

The attractiveness of having a vision tempts somemanagers to counterfeit one by imposing a statementthrough administrative authority. However, there are noshortcuts. Vision can only be shapedby listening, reflecting,and learning through action. A person involved with theorganization —including a person with a disability or afamily member— contributes to developing vision throughthese simple, but difficult activities:

❍ Invite a variety of people to describe their sense of adesirable future for people with disabilities, their fami-lies, and other members of their communities. Listencarefully and respectfully for the kind of communitypeople want to create to support their search forbetter lives. Pay special attention to people with dis-abilities, their families and friends.

❍ Keep the conversation going beyond statements aboutthe internal state of the person with a disability (like“being happy” or “reaching full potential”). Ask, “Whatwould it take to increase the chances of being happy orreaching potential?”

❍ Critically study the thoughts of others who have consid-ered the situation of people with disabilities and thequestion of developing strong communities.

The power of vision

No short cuts

To develop vision…

…converse


❍ Reflect on what people say. Think about what socialcircumstances will make it possible for people withdisabilities to pursue better lives. Look for commonthemes and vibrant images among the different answerspeople give. Think about whether or not conflictinganswers point toward some common intention.

❍ Practice expressing a vision that captures and vividlycommunicates what people want to work towardtogether. Try alternative ways to clearly express vision:experiment with different symbols and media. Checkexpressions against other people’s felt sense of a trueand exciting direction.

❍ Ask for agreement about vision, “Is this really what wewant to create?” Declare personal commitment to worktoward the vision.

❍ Feel the tension between the vision and current reality,“How does this vision stretch us?” “Does it test ourcourage to describe the distance between what we nowhave and what we want?”

❍ Scan for opportunities to try behavior consistent withthe vision. Keep asking, “How can we respond to thissituation in a way that moves us toward our vision?”

❍ Make time to refresh the vision by renewed listening,reflecting on how working toward the vision deepens ormodifies its meaning, reaching out to involve newpeople, and celebrating.

…communicate

…act

…renew

…reflect


Organizational Purpose

Distinctive contribution

A desirable personal future

Vision evokes future social conditions that will makepossible better lives for people with disabilities . Organiza-tional purpose specifies the distinctive contribution a particularhuman service program can make to creating those conditions.Organizational purpose

✓ Identifies the position the program seeks in the lives of thepeople who rely on it and in their communities

✓ Delimits organizational contracts by defining the kinds ofpromises the program can legitimately make

✓ Concentrates energy by ruling out a number of possiblecourses of action

✓ Promotes organizational learning by presenting assump-tions about what is possible and what is not and focusingwhat the organization needs to learn

Statements of organizational purpose answer the basic questionfrom people with disabilities, their families, and their commu-nities: “How can you help?”

These three purposes of services for people who requirelong term support (O’Brien & Lyle, 1987) offer a starting pointfor a human service organization’s efforts to understand,articulate, and negotiate its purposes.

➻ Assist people with disabilities, along with their familiesand friends, to discover and move toward a desirablepersonal future as part of ordinary community life.

• Help people, as necessary, to define their interests andcapacities, often by helping them discover, try and evaluatea variety of new experiences

• Assist in development of opportunities for people to pursue

Three purposes of human services forpeople who require long term support


their interests in community settings, including workplaces,schools, and a home of the person’s choice

• Provide or arrange the assistance, adaptions, systematicinstruction, or other supports necessary for the person to usecommunity opportunities.

…primary focus on people’s deficiencies;treatments; & professional-client relation-ships

…congregating people with disabilitiestogether for service purposes

…human service owned & operated build-ings

… alliances with people with disabilities,their families, & friends

…expressing visions of desirable personalfutures, even for people who have verylimited experiences or great difficultycommunicating

…better incorporating necessary, skilled helpwith health, mobility, communication, learning,and self-control into the routines of ordinarysetting

…personalizing support to match individualneeds.

A human service that acceptsthis purpose will…

…move away from… …move toward…

➻ Offer needed help in ways that support and strengthencommunity competence.

• Support, don't substitute for, families and friends who care

• Strengthen links to community networks

• Expand membership in community associations

• Increase the inclusiveness of regular classrooms, the open-ness of the local economy by developing a variety of jobsfor people with disabilities, and the number of adults withdisabilities who lease or own homes

• Improve the effectiveness and inclusiveness of the servicesand benefits available to all citizens

• Build alliances with people and groups concerned withimproving community life.

Build competentcommunities



…all or nothing service designs

… the assumption that service providersnecessarily know better than people withdisabilities, their families and friends,and ordinary people who share class-rooms, work places & neighborhoodswith people with disabilities

…positioning the service as a charityworthy of community support becauseof the good it does for unfortunates

… staff disconnection from communitypeople, organizations, & activities.

…move away from… …move toward…

… sharing responsibility for providing assistancewith families, friends, classmates,coworkers, andneighbors

…consulting people about how they would defineand solve problems for themselves

… positioning the service as worthy of supportbecause it builds the inclusiveness of the commu-nity

… staff involvement with community people,organizations, and activities.

…evaluating people in terms ofwhat they must do to get readyfor valued experiences

… assessing experiencesimposed by service providers ongroups of people as “for theirown good” or as “what theychoose”

… erecting service continuuawhich require people with severedisabilities to earn their way tovalued experiences

…determining what it wouldtake to offer a person goodexperiences today

…assessing experiences imposedby service providers by askingthe people involved for their ownevaluations and by asking “Howwould this seem to me if I wereexperiencing it?”

…developing policies andservices that offer flexibleassistance and back-up to peopleinvolved in a variety of individu-ally chosen community settings.

…move toward……move away from…

➻ Offer needed help in ways that protect and promotevalued experiences now for the people who rely onservices.

• Identify, solve, and evaluate day to day problems interms of their impact on the quality of people’s every-day experience.

• Evaluate long term investments in terms of their impacton the quality of people’s everyday experience.

Support goodexperiences now



Independencereconsidered

Many human service policies identify independenceas a central puropse. But I do not. Independence can’t bean organizational purpose if it is understood as being ableto do for oneself, without extra help. Most people withsevere disabilities need continuing extra help and many ofthem rely on human services for at least part of that help.Most people’s abilities can be enhanced and most peoplecan get a substantial part of the extra help they need fromfamily members and friends, classmates, co-workers, andother ordinary people. But a service that identifies itsdistinctive contribution as treating people so they will dofor themselves makes a promise to severely disabledpeople that existing technology won’t allow it to keep. Anorganization bound to this common understanding ofindependence will avoid people it is technically incompe-tent to serve. Of course, people unable to manage withoutextra help can be in charge of their own lives. Most peoplewith severe disabilities can set goals for themselves andexpress preferences about the way they want to live. Manypeople with severe disabilities can supervise their helpers.Human service policies and practices can promise peoplewith severe disabilities assistance in pursuing a desirablepersonal future and backing to control their own lives.

When the people who rely on a human serviceexperience severe disabilities, defining and negotiatingorganizational purpose is problematic for three reasons: theuncertainty of technology, the endurance of prejudiceagainst people with severe disabilities, and the rigidity ofmost available human service funding.

❑ The effects of available technology are uncertain.Most people with severe disabilities can expectsignificant help with mobility, health, communica-tion, productivity, and learning new things.They canexpect the people who assist them in these areas tocontinuously improve the effectiveness of assistance(Snell, 1988). But cure lies beyond reasonable expec-tation and this complicates discussion of purposes.Some people find it hard to value activities that open

Barriers to clarifying & negotiatingorganizational purpose

Uncertain technology


opportunities and offer support to people withoutpromising some form of technical fix. Some peoplefind it easier to cope with the impression that aperson with a severe disability should accept fate thanwith the fact that real change can happen but not cure.Some people with professional skills find it difficultto acknowledge the limits of their expertise andauthority.

❑ People with severe disabilities face ingrained socialprejudice which results in their exclusion fromeveryday life. The prejudices that justify exclusioncontrol many people’s thinking about what makessense for people with disabilities. Confrontingprejudice means challenging and changing arrange-ments that many people believe make so much sensethat alternatives seem absurd or unthinkable.

• In an environment shaped by exclusion, it hascome to make sense to leave people with dis-abilities out of ordinary classrooms, workplaces,and homes until their disability has been repairedby heroic individual and professional efforts in asuccession of carefully graduated service envi-ronments (Taylor, 1988).

• In an environment shaped by exclusion, it makessense to assign full responsibility for all of theeffects of prejudice and service failure to theperson with a disability and to redefine collectivefailure in medical terms as individual chronicity(Ferguson, 1988).

There is no reliable technology for engineeringchanges in community life, or, for that matter, withinservice settings. Shifting the social patterns thatexclude and blame people with severe disabilitiesrequires person to person, setting by setting effort.Worse yet, service policy makers and providers whowant change in community practices and attitudesencounter the necessity of confronting and changingthemselves as their efforts at changing communitymembers become entangled in the constraints of theirown system. Many service policy makers and provid-

Prejudice & Exclusion


ers experience understandable reluctance to assumepurposes which call for so much change.

❑ Most funders don’t pay to assist people to lead betterlives; they pay for slots, seats, beds, placements,active treatment, or preparation for competitiveemployment. A growing proportion of service provid-ers are virtually wholly owned subsidiaries of fundingsources which impose purposes and procedures.Many service managers rightly believe that personaland organizational survival depends on carrying outthe funder’s purposes and requirements, as defined bythe funder’s agents and monitors. And when funderexpectations vary from local experience, fear offailure drives providers to act as if the emperor isfashionably dressed. As one residential provider said,

People are supposed to flow from here to inde-pendence because of the training programs we run.That doesn’t work for the people here. Just becausethey need some personal attendant care, they arestuck here. And all the training programs we runaren’t going to change that enough to make adifference. But [the system] doesn’t care aboutthat. They don’t want to hear. All that matters tothem is that we are recording enough hours ofactive treatment every day to keep the moneyflowing. That makes a big part of our job a joke.

This leaves policy makers with a distorted picture ofthe situation they manage and providers with littleincentive or energy to explore and negotiate purpose.

Effective leadership clarifies and strengthenspurpose by focusing the organization’s energy on fulfillingpromises it can keep that will assist people to lead betterlives. Anyone involved with the organization can exerciseleadership in clarifying purpose by assisting people in theorganization to deal with these complex issues:

+

Funder impositions

Ineptpolicies

A vicious circle:

Distorted account of performance

Leadership through purpose


❍ Spend time thinking about the distinctive contributionthis organization can make to building the social condi-tions necessary for people with disabilities to lead betterlives. Consider what people with disabilities and theirfamilies and friends want for themselves and identifyhow the organization can assist. Gather informationabout what other organizations are doing to assist thepeople who rely on them. Think about what it is reason-able to expect from the available technology and clearlydescribe its present limits. Express the results of all thisthinking in a clear statement of organizational purpose.

❍ Select people who are likely to have trouble under-standing the organizational purpose statement andfigure out how to explain it to them and get their com-ments.

❍ Select people who are likely to oppose the organiza-tional purpose statement and understand the reasons fortheir opposition. Look for ways to negotiate theiragreement without compromising the organization’spurposes.

❍ Look closely at expectations the organization has forprofessional people. Avoid pushing professionals intothe role of magician by making them responsible forresolving situations which in fact can only be addressedif everyone involved joins in working together. Timeswhen people feel disappointed with professionals aregood times to reconsider ways to take shared responsi-bility.

❍ Limit the authority the organization offers people inprofessional roles to areas of their legitimate compe-tence. Expect professional work to contribute to ratherthan control organizational purpose: remember, theorganization exists to help people define and pursuebetter lives; professional assistance is one of the meansto that end. Expect professionals to join discussionsabout organizational purpose and individual people’sfutures as equals with other concerned people. Expectprofessionals to sometimes say, “I don’t know; let’swork on it together.” Enable professionals to keep upwith the rapid growth of knowledge in their field. Times

Clarify what the organizationcan do

Debate purpose

Define professional roles


when people feel resentful of professionals are goodtimes to renegotiate expectations.

❍ Learn to read the purposes the organization communi-cates through its settings and processes (Williams &Tyne, 1988). Recognize, call attention to, and work tochange the ways the organization expresses socialprejudices against people with severe disabilities (Wolfensberger & Glenn, 1975; Wolfensberger & Tho-mas, 1983).

❍ Examine the assumptions and procedures that shape theway the organization makes decisions about people withdisabilities. Closely challenge the relevance, the limita-tions, and the costs of testing procedures, entrance andexit criteria that control access to opportunities, andrecord keeping. Ask, “Does our decision making focusattention on people’s capacities as well as their deficien-cies?” Ask, “Does our decision making value personalknowledge at least as much as professional conclu-sions?” Ask, “How does decision making about indi-viduals change the way we use program resources?”

❍ Pay attention to complaints about the ways fundingarrangements, system regulations, and policies blockefforts to assist people to lead better lives. Look forways to satisfy requirements and do what’s necessary;negotiate with funders and regulators for waivers or re-interpretations of rules to permit action; improve policymaker’s information about system barriers by collectingand communicating information about what people wantto do that is otherwise likely to be hidden from them;and support efforts to change counterproductive poli-cies.

❍ Shift resources toward activities that support organiza-tional purposes as rapidly as possible.

Test organizationin terms of purpose

Invest in purpose


A clear vision of an inclusive community setsdirection. Organizational purposes identify the distinctiveways a human service organization contributes to buildinginclusive community by assisting people with severedisabilities to discover and pursue desirable personalfutures in ways that support valued experiences. Clearlydefined accomplishments guide daily work in terms ofpurpose and vision.

Making progress toward the vision depends oncontinuous improvement in capacity to manage the prob-lems created by assisting people with severe disabilities totake their place in community life. Service accomplish-ments set boundaries on solutions to the stream of prob-lems that arise as leaders align service resources withpeople’s desires for a positive future.

Progress on problems comes through a cycle ofwork in which a person with a disability, family andfriends, and service staff define steps toward a desirablepersonal future, identify opportunities for and obstacles totaking these steps, involve other people as necessary, planand take action to develop opportunities and supports,negotiate the conflicts arising from action, review whatworked and what didn’t work, and identify the next step.Maintaining and allocating resources through thiscycle, over time and in harmony with vision and organ-izational purpose, creates good quality services (Dem-ing, 1986).

Service Accomplishments

Continuous improvement

Define steps toward a desirable future

Identify obstacles &opportunities

Involve others

Act to create opportunities& provide support

Negotiate conflicts

Review what worked& what didn't work


Five closely linked service accomplishments focusand guide service staff in their work. Accomplishmentsdescribe worthy consequences of service activities. Accom-plishments don’t prescribe how service staff should behave;they clearly identify results worth the costs of producing(Gilbert, 1978). Each accomplishment supports a vitaldimension of human experience which common practicelimits for people with severe disabilities. These interde-pendent qualities of experience include:

✚ Growing in relationships

✚ Contributing

✚ Making choices

✚ Having the dignity of valued social roles

✚ Sharing ordinary places and activities.

Each accomplishment challenges and strengthens therelationship between people with disabilities and othercommunity members.

➔ A human service program focused on communityparticipation will mobilize its resources to assist peoplewith severe disabilities to form and maintain the varietyof ties and connections that constitute community life.

• A growing number of people with severe disabilitieswill know and be known by non-disabled neighbors,fellow students, and co-workers; form acquaintances;get in contact with others who share an interest; makefriends; share intimacy; join a variety of communityassociations and enjoy the responsibilities and benefitsof membership; and participate in civic, cultural, andpolitical life (Ordinary Life Working Group, 1988).

• People have the help they need to keep in touch withfamily members or friends from their past.

• While many people with disabilities will choose friend-ships and association with other people with disabili-ties, services will not impose congregation with peoplewith disabilities as a condition of service.

Accomplishments supportvalued experiences & buildcommunity competence

Valued experiences

Assisting people to grow inrelationships


Building community participation challenges all people tolive interdependently.

➔ A human service program focused on supportingcontribution will mobilize its resources to assist peoplewith severe disabilities to discover and express theirgifts and capacities.

• A growing number of people with severe disabilitieswill contribute to others’ learning, enjoyment, and wellbeing as companions, fellow students, team mates, co-workers, and associates.

• People will have the help they need to explore theirinterests and capacities, to develop skills, to preservehealth and mobility, to communicate effectively andconfidently, and to increase self-control and attention.

Facilitating everyone’s contribution challenges all peopleto invest in recognizing and developing human resources.

➔ A human service program focused on promoting choicewill mobilize its resources to assist people with severedisabilities to increase control over their own lives.

• A growing number of people with severe disabilitieswill set goals that are personally meaningful, expresspersonal preferences, and manage the assistance theyreceive.

• People unable to make decisions for themselves be-cause of age or extent of disability will have a strongpersonal relationship with a guardian who managesonly those areas of life in which the person is incompe-tent.

• People will have the help they need to express theirpreferences, define personal goals, and try to attract thesupport they need from others to pursue their goals.

The challenge:Interdependence

Assisting people tocontribute

The challenge:Development

Assisting prople toexercise choice


The challenge:Resolving conflict

Assisting people toexperience dignity

• People will get necessary assistance to interpret theirenvironment, to understand other people’s expectationsand conditions for cooperation, to figure out satisfyingways to pursue what they want, to communicate effec-tively, to negotiate conflicts, to limit risks, and tomanage the good and bad consequences of their deci-sions.

Promoting choice challenges all people to creatively resolveconflicts.

➔ A human service program focused on encouragingvalued social roles will mobilize its resources to assistpeople with severe disabilities to experience the dignityand status associated with positively regarded activities.

• A growing number of people with severe disabilitieswill take their place and be recognized as good neigh-bors, contributing classmates, active members, friends,home owners, productive wage earners, and goodcitizens.

• People will get necessary assistance to locate and fillvalued social roles in community settings, meet orchange the ordinary expectations of other people in thesettings, deal effectively with prejudiced or stereotypedresponses from others, and present themselves posi-tively.

• Human service programs will pay rigorous attention toeliminating stigmatizing effects of their own practices(Wolfensberger & Thomas, 1983).

Encouraging valued social roles challenges all people todiscard stereotypes; see other people as as individuals; andrepair the damage done by past prejudiced treatment.

The challenge:Giving up stereotypes


➔ A human service program focused on communitypresence will mobilize its resources to assist people withsevere disabilities to share the ordinary places andactivities of ordinary community life.

• A growing number of people with severe disabilitieswill use a growing variety of ordinary communitysettings at the same time and in similar ways to othercitizens.

• People will get necessary assistance to identify usefulor enjoyable community settings, to get to and from avariety of ordinary places safely, and to participateeffectively.

Increasing community presence challenges all people’swillingness to include everyone.

The diagram on the next page summarizes the relationshipbetween valued experiences for people and service accom-plishments.

Assisting people toShare ordinary places

The challenge:Inclusion

The relationship of serviceaccomplishments to valuedexperiences:

➔ ✚


Community Participation

Encouraging Valued Social Roles

Promoting Choice Supporting Contribution

Community Presence

Valued experiences for

people:

Dignity ofValued Roles

Sharing Ordinary Places

Making Choices Contributing

Growing inRelationships

Are created by peoples own efforts

and the efforts of friends, family and

communinty members, and are

assisted by these accomplishments

of human service providers:

The challenges of assisting people with severedisabilities to discover, take, and keep their place in com-munity life present messy problems which require manycycles of action and reflection. The work makes emotionaldemands: people face the demands of close personal con-tact as well as failure, resistance, rejection, and disappoint-ment. As emotion increases, the pressure grows to avoidwork by fragmenting or denying responsibility, blaming,underestimating what is possible, avoiding informationabout the effects of action, waiting for a magic solution, orritualizing (Menzies, 1959). As time goes by and complexi-ties and emotional pressures grow, people working on abetter future can easily loose track of where they set out togo. In such a complex, highly charged situation, anyoneexercises leadership who involves people in these activities.

❍ Spend time listening to people with disabilities, andtheir families and friends about their past, their interests,concerns, and sense of future. Listen to people as indi-viduals and bring people together to talk as a group.Include people who are isolated from family and friendsand people who have difficulty communicating. Profilethe person’s life by describing the way the person experi-ences relationships, contribution, choice, status, andordinary community places. Record the images and ideasabout the person’s capacities and interests and verify therecord with the person and family and friends. Use suchexpressions of vision for the person as a guide and acheck on the focus of service.

❍ Develop opportunities for people to pursue their inter-ests in community activities and associations. In develop-ing opportunities, work on offering people more of eachof the valued experiences. Find opportunities that offeraccess to more ordinary places, give people the chance tomeet people, offer the person a choice, fit the individual’scapacities and interests, and provide a valued social role.

Emotional pressures to avoid accomplishment

Leadership for Accomplishment

❍ Practice reversing typical service patterns: instead oflisting ways the person should change, identify opportu-nities and supports that would offer the person new,positive experiences; instead of gathering informationabout the person, gather information about the commu-nity; instead of controlling the person, give the personcontrol.

❍ Carefully evaluate the organization’s capacity from thepoint of view of the five service accomplishments. Askthe people who rely on the program and their familiesand friends to evaluate the program’s effectiveness inpromoting choice, status, contribution, presence, andrelationships. Plan and negotiate ways to reallocateresources to increase capacity.

Developing high quality human services for peoplewith severe disabilities demands active engagement incomplex, emotionally charged, ambiguous situations. Itcalls for reallocation of service resources, working outsidetraditional boundaries, and renegotiation of the service’sposition in community life. This essential work calls for themotivation arising from a vision of inclusive community,the boundaries set by a clear and realistic sense of organ-izational purpose, and the focus offered by well definedservice accomplishments. It requires effective leadershipfrom service workers, people with disabilities, and theirfamilies and friends if all those concerned are to face thedifficult problems of creating high quality services and tomake progress toward resolving them.

Conclusion


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