zPeter

F. Gerhardt, Ed.D.

Bridges to Adulthood for Learners With Autism Spectrum Disorders: Targeting Skills for the Next Environment
Peter F. Gerhardt, Ed.D. Organization for Autism Research Pgerhardt@researchautism.org

The Organization for Autism Research

OARs Mission is To apply research to the challenges of autism

Why Research is Important

z z z

What is applied Research?

z

Seeing is not believing Correlation does not mean causation With a population of 297,000,000 people, one in a million occurrences happen to 297 Americans each day just as a matter of chance and coincidence. As professionals, we have an ethical obligation to our clients to provide treatment and intervention that is evidence-based and, thereby, most likely to be effective.

Applied research is direct, systematic research in support of individuals and families impacted by an autism spectrum disorder diagnosis and the systems charged with educating these learners across their lifetimes. Applied research addresses issues of practical importance, social significance, and results in outcomes with the potential to enhance the quality of life of individual learners. Applied research is not contradictory to and is, in fact, complimentary to research into the biomedical, neurological or genetic/cellular basis for autism spectrum disorders.

These children often show a surprising

sensitivity to the personality of the teacher [ ] They can be taught but only by those who give them true understanding and affection, people who show kindness towards them and yes, humor [ ] The teachers underlying attitude influences, involuntarily and unconsciously, the mood and behavior of the child.
-Hans Asperger, 1944

Understanding ABA as an Applied Science

ABA is a field of inquiry dedicated to to investigating and modifying behavior in a systematic way. ABA is: Data-based Analytical Able to be replicated Socially important Contextual Accountable (Sulzer-Azaroff & Mayer, 1991)

z z z z z z

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Applied Behavior Analysis and Real Life

Why Is ABA Effective For Older Learners with ASD?

z

A-----------------B---------------------C
I cook --------- My Wife Says MMM--------I cook again

Applied Behavior Analysis is a vast scientific discipline based upon over 35 years of published research. Applied Behavior Analysts develop interventions that are based upon empirically validated research and best practices for both skill acquisition and behavior reduction.

A-----------------B---------------------C
I drink tequila ------I get sick-------------No more tequila

A-----------------B---------------------C
I go to work----------I dont get paid---------I quit

Applied Behavior Analysis interventions: z Highlight relevant stimuli while simultaneously minimizing extraneous stimuli z Recognize the power of positive reinforcement
Functionally determined, Contingent, Continual, Intermittent

Why Is ABA Effective For Older Learners with ASD?

ABA utilizes systematic prompting and prompt fading
Promotes consistency across support staff Provides for data based decision making

ABA...

Why Is ABA Effective For Older Learners with ASD?

through task analysis, breaks complex material into teachable

units and identifies complementary repertoires (next) beyond discrete trial instruction
z z z z z z

represents a teaching method with tremendous versatility

Fluency/Rate-base instruction Shaping Chaining Incidental strategies/NET Environmental/curricular modifications Peer instruction and support

In supporting adolescents and adults, there are times where previously accepted prompt hierarchies may have to be modified as a function of community standards
z

Behavior Analysts respect the role of significant others in the individuals life as central to the implementation of an effective intervention.

provides numerous structured opportunities for learner to

acquire and practice a new skill or response in isolation prior to expecting the learner to show discrimination

Why Is ABA Effective For Older Learners with ASD?

z

Applied Behavior Analysis is a PERSON CENTERED/POSITIVE approach to behavior change. Functional assessments enable identification of the underlying communicative intent of challenging behaviors
Functional assessments enable interventionists to respect goals,

Characteristics of ABA That Are Often Overlooked in General Practice

z z z z z z

while helping the individual develop other ways to meet those goals
Behavior plans provide individuals with more acceptable tools for

negotiating their environment

ABA is both skill acquisition and behavior reduction ABA uses both proactive and reactive intervention strategies True treatments outcome are measured in terms of generalization and maintenance in real life environments Assessment, support and instruction in ABA is ongoing All attempts at skill acquisition and behavior reduction are highly individualized By its very definition, reinforcement works!

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So in summary
z z z z z z

ABA is an individualized, person centered approach The usefulness of ABA in both skill acquisition and behavior reduction is very well documented ABA uses both proactive and reactive intervention strategies, often concurrently Treatment outcome is often measured in terms of generalization and maintenance in real life environments Assessment in ABA is ongoing Attempts at skill acquisition and behavior reduction are both highly individualized

So What Happens When Worlds Collide?

Autism World

Neurotypical World

There is a perception that the only acceptable outcome is for the person with ASD to be indistinguishable from the NT Standard of Behavior

This, however, may not be the most efficacious approach. Instead:

NT AUTISM

NT

ASD

This area of potential overlap (of both skills & interests) may have the greatest potential for the development of mutually beneficial services and supports while recognizing the strengths and deficits of both worlds.

Defining Characteristics in Adulthood

z z z z z z

Career choices Where and how we live Lifestyle issues Leisure, recreation, and hobbies Our public social circle Our private social circle Quality of life concerns

Which Means

Failure to attend to any one of these defining components may lead to significant challenges to the development of services that support a positive quality of life.

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The Universe of Desirable Skills

The Universe of Skills at Age 5 Years

First, It Might Be Appropriate for Us to Discuss Some of the Issues Related To:

The Universe of Skills Usually Defined as Transition Skills

The Universe of Skills at Age 21 Years

PROBLEMATIC BEHAVIOR IN ADOLSCENTS AND ADULTS!

Specific Deficits That May Predispose Individuals to Engage in Problematic Behavior

z z z

There cannot be a crisis next week. My schedule is already full. Henry Kissinger (1923 - )

z z z z z z

Limited access to reinforcement Low tolerance to change Difficulties with unstructured time Restricted leisure skills repertoire Selective attention by support staff Confusion Difficulties with waiting or delaying R+ Poor environmental congruence Inability to exercise appropriate control over their environment

Fundamental Assumptions of Functional Behavior Assessment

z Behavior

Functional Behavior Model

Setting Event Antecedent Problem Behavior Maintaining Consequence

has a purpose z Challenging behavior often is communication z Challenging behavior often is related to events before and after z Sometimes challenging behavior serves multiple functions

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FBA: A continuum of options*

Functional Behavior Model

Low Effort/Precision High Effort/Precision
Direct observations In Vivo by others environmental or curricular modifications Experimental environmental or curricular modifications

Setting Event
Little sleep Teased Fight Hungry

Antecedent
Demand Least favorite subject Least favorite person

Problem Behavior
Aggression

Maintaining Consequence
Attention Escape Tangible Sensory

Interviews/ Record review

Teacher recorded observations

Least control/ Most subjective

Little reliability & Greater reliability Greater reliability Greatest error rate*, (observer but error rate may but very time reliability but bias) high and remain a factor intensive may be too confounded by staff & time multiple factors intensive
*Our discriminations may be inaccurate

Source: Sevier County Dept. of Special Education

Issues in Behavioral Intervention With Adolescents & Adults With ASD

z The

A Short List of Possible SocialSocialCommunicative Functions

zI

importance of the appropriate use of positive reinforcement remains significant. z Function, function, function! z Why do I think I have to intervene? z To what extent does the display of the behavior limit his or her life? z When is a behavior an idiosyncrasy? z Control is the issue.

need help z I dont like this z I would rather be doing that z Hey, over here z I dont understand z Youre standing too damn close z Its way too cold in here today

And .
zI

100 90 80 70
Fre que ncy

Student A Aggression Totals

dont feel well z Youre supposed to do it this way z This is sooooooooo boring z Who are you? z Whats in it for me? z I can make my own choices thank you z Its been a rough morning and I really just need a break z Can I have a taste of that lasagna? z And so on .

Low High1 Sib High2

60 50 40 30 20 10 0
1 8 15 22 29 /6 /3 0 9/ 9/ 3 /2 7 0 /1 11 7 /1 10 /2 11 9/ 9/ 9/ /1 10 10 11 10 11 /2 4

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The Transition Process

First, a few quick thoughts regarding supporting the transition process for learners with ASD who are included in regular education

Inclusion and the transition process

The Middle School Years

(Klin & Volkmar, 2000)

With increasing numbers of learners with autism being educated in more inclusive settings, special attention needs to be paid to their transition needs beyond classroom academics.

Special considerations for middle school aged learns with AS need to include:
z

Ample opportunity for individualized attention, instructional methodology and small group work Availability of a communication specialist with experience in supporting pragmatic communication

z Opportunities

for social interaction in structured, supported settings as well as in the naturalistic environment and support for NT peers

z Identification

of a safe person who may be made available to the learner on an asneeded basis and support in meta-cognitive, or learning to learn, strategies including scheduling, organization, problem solving and study skills

z Training

z Instruction

z Commitment

to the provision of skills necessary for success outside the classroom

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The Journey Through High School

z More z Direct

instruction in the generalization of acquired skills management of own behavior

opportunity of individualized curricular support of continued social ostracization

z Possibility z Self

z Independent z Social

sexual safety skills relevant to peers and the community at large

of academic strengths, there is a critical need for continued social, community and vocational support & instruction

Deciding upon the components of an effective transition plan Accepting that all of us have far fewer skills than we dont have, and that the skill need for learners with ASD is great, how do we decide upon what to teach?

Priorities of Instruction in Transition Programming

z Solicit

student and family input as to where they want to be in 5 years, 10 years, etc. current and potential future environments. skill needs across environments in terms of work, social and navigation skills.
Adapted from: Wehman, P. (1992). Life Beyond the Classroom: Strategies for young people with disabilities. Baltimore: Paul H. Brookes.

z Survey

z Assess

And
z

The Ultimate Transition Strategy

z When

Prioritize skills that occur across multiple environments Attend to safety skills Attend to skills that reduce dependence Attend to skills you will need to provide the NT cohort

z z z

speaking about skill development always remember that for a specific skill If you can teach the skill, teach it If you cant teach the skill, adapt it If you cant adapt it, figure out some way around it If you cant figure out some way around it, teach the NTs to deal

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So, In Brief, We Can Then Define Functional Transition Programming As:

z Relevant zA

And As
z Focused

across multiple environments

on the pragmatic use of communication attention to the social skill dimension of most activities general, extremely hard work

continual programmatic focus through the functional use of skills of individual and family preferences, as well as community demands

z Including

z Aware

z In

Criteria of Ultimate Functionality

According to Lou Brown (1983), the ultimate test of functionality of specific IEP goals is to ask:

Sample Goal Sheet

z z

z z z z z z

If the student does not learn to do the task, will someone else have to do it for them?

Student: Mark Doe Age: 14 years Transition to Employment Goal: To obtain employment in a field where; 1) there are clear completion criteria, 2) he will be able to listen to his music on a walkman, 3) he will be able to access transportation to, and 4) he will work directly with one primary supervisor. Short Term Objectives (3 Months): Investigate employment opportunities meeting these criteria School Staff Assess appropriate opportunities in terms of production, social, and safety demands Transition Specialist Obtain bus pass for ride to work - Parents Obtain state issued non-drivers drivers license for purposes of identification - Parents and so on.

Some Useful Transition to Work Skills

So Why These Skills?

Personal Mobility Seeking Assistance Quality Control/ Self Checking Self Monitoring of Behavior Task Scheduling Endurance Functional Communication Age Referenced Clothing & Hygiene
Because they are all skills that are useful across multiple environments.

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Support in the Work Place

Support in the workplace

z The

Assessment Process

Need to redefine work readiness Preference assessments Developmental jobs Job carving Co-worker training Job match considerations

What is Job Match?

z Job

Components of The Physical Job Match

z z z z z z z

Match is the extent to which a particular job meets the individuals needs in terms of challenge, interest, comfort, camaraderie, status, hours, pay & benefits. Ideally, as we move through the job market, we get closer and closer to our ideal job match.

Hours of employment Acceptable noise levels Pay, benefits, vacations, holidays, etc Acceptably activity levels Physical requirements of the job (e.G. Lifting) Quality control requirements Production requirements

Components of the Social Job Match

z z z z z z z z

Four Basic Transition Skills Relevant to All Students

1.

Acceptable level of interaction Clear job expectations Navigation skills Grooming and hygiene Communication skills relevant to environment Personal space Phone/vending/cafeteria Co-worker training and support

2. 3. 4.

The ability to assess themselves including skills and abilities and the needs associated with their disability Awareness of the accommodations they might need Knowledge of their rights to these accommodations, and The advocacy skills necessary to express their needs across multiple environments.

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This, in other terms, is self advocacy. Self advocacy is global term for an individuals ability to effectively and appropriately argue on their own behalf for change that is directly relevant to their own lives. Given that, perhaps the more correct term for this ability is simply, advocacy.

Specific Areas of Advocacy Instruction

z Legal

and civil rights acquisition and choice z Personal safety z Social relationships z Sexual relationships z Choice and control
z Service

Some Poorly Understood Forms of Advocacy

z Aggression z Self

injury

z Disruption z Elopement z Non-compliance z Obsessing z Nagging

or badgering

The Family The Family The Family The Family The Family The Family

The scope of the challenge

Complicating the question of family support is not just the recognized diversity in expression that is autism, but in the sometimes overlooked diversity in: z families in general; z individual family members in particular, and; z the impact on family members at different times in the family life cycle.

The scope of the challenge

z It

then becomes increasingly clear that effective models of family support need to be first, available, and then individualized, flexible, and relevant to the needs of families at a given point in time. In other words, family support models need to based on a functional analytic perspective of family needs across the life span (Cutler & Kozloff, 1987).

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F. Gerhardt, Ed.D.

Defining Support
z From a

Expected Outcomes of Functional Family Support

z Family z Aids

behavior analytic perspective, the term support needs to be viewed in the same functional manner as are the terms reinforcement or punishment. Just as stimuli associated with these terms are defined solely by their impact (increase or decrease) on a behavior, parent support interventions need to be defined solely by their impact on parental stress and adaptation. In other words, what is support to one may be stress to another.

functioning is less disrupted in the preservation of more intact families z Educational benefits accrue to the child with a developmental disability z Reductions in the use of crisis models of support z Potential long-term cost savings

A PINWHEEL OF COMPLEX INDIVIDUAL EMOTIONS

Serenity Sadness False Promises Stress Level Future? Lorenzos Oil Joy Anxiety

A few (controllable) sources of professional induced stress

z Failure

WINNER!

Fear Hope

to recognize that parents of learners with developmental disabilities are increasingly becoming the most well-read segment of our service system, often times outstripping staff in terms of general knowledge to recognize families as partners

z Failure

A few (controllable) sources of professional induced stress

z Failure

A few (controllable) sources of professional induced stress

z Failure

to recognize that, as a rule, all families participate in their childs education to the fullest extent possible to schedule meetings that do NOT conflict with other family obligations (e.g. work, sibling activities, etc.)

to provide effective or appropriate channels of communication and/or feedback to provide appropriate or effective educational or related programs in the ________________

z Failure z Failure

z Fill

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F. Gerhardt, Ed.D.

Families
z

The first role of the transition professional is, in many cases, to listen carefully -- then to offer input and advice and, ultimately work to develop a transition plan that incorporates mutually agreed upon objectives. This is not to say that parents are always right (just as professionals are not always right) but a respectful, collaborative relationship is generally more productive than a combative, argumentative one.

The Social World

What do we mean by the term SOCIAL SKILLS SKILLS?

z Social

Social Threads of Discussion From the Douglass Group

z I

skills might best be understood as access and navigation skills they are how we acquire desirables and avoid negatives by successfully navigating (and manipulating) the world around us. They are complex, multilayered skills that are bound by both content and context.

just want someone to show me the rules.

z Independence,

and respect for ones independence are important. you NTs have all the skills, why dont you adapt for awhile?

z If

More Threads
z Special z There

More Threads
z Reports z What

interests are important.

of social isolation are prevalent

is little potential for distinction between who they are and their status as a person with AS. not so much knowing the skill but using the skill.

about empathy between group members?

z Its

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The Increasing Demands of the Social World

z

The Increasing Demands of the Social World

z

Your social demands are often lowest within your home. Why? Because you set the rules of acceptable behavior. Your social demands at work are higher. However, work is a somewhat scripted social environment and one with a secondary measure of competence (i.e., production).

Next comes the community at large. Why? Because in the community you have less control over events and actions that impact you. Lastly comes the world beyond your community. Whether a different social circle or different country, chances are you social skill repertoire may be less than adequate.

The Urinal Game: Which to Choose? Challenges to Adequate Social Skill Instruction or Support
z The

nature of ASD

z Social

skills, by their very nature, are variable across environment, time, task, and people skills have diverse criteria of competence

z Social

And And
z

And
z

Social skill instruction involves both when and when not to use the skill as a function of multiple cues Failure, on the part of the instructor, to adequately assess social demands Failure, on the part of the instructor, to adequately prioritize social skill instruction

Failure, on the part of the instructor, to provide sufficient examples and opportunities to use the taught skills Failure, on the part of the instructor, to consider providing social skill support and instruction to the NT cohort But there are some things that can be done

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Strategies to Promote Social Competence

Demand Assessment Power Cards, etc. Provision of Feedback Provide opportunities to use the skills taught Role Play Social Stories or Scripts Self-monitoring Meta-cognitive Strategies Train the NTs!

Necessary, Preferred and Marginal Skills

Necessary: Skills upon which independence may depend Riding Mass Wait until others get off Transit before you get on Lunch with co-workers Using a Urinal in a A Public Restroom Eat Neatly Preferred: Skills that support independence but may not be critical Marginal: Skills that, while valuable, may be negotiable

Fluency Training Generalization Training Incidental Strategies and Support

Whenever possible, chose Whenever possible, put a a seat where you are not row between you and sitting next to someone other passengers Respond to interaction from co-workers Picking the correct urinal Initiate interactions with co-workers Not saying hello to someone at the sink

Keeping your pants up around your waist; Not looking at others at the urinal

Demand Assessment
z Demand

Role Play
z Role

assessment requires that instruction mirrors the actual environmental demands of a particular situation or situations so that those social skills with the greatest functional relevance are those that are taught first.

play involves the repeated rehearsal of a particular social situation or situations. If role play is to be effective, it must:
Reflect the real environmental demands Be practiced under a variety of conditions Be practiced to a fluency level Low frequency skills may need to be revisited

on occassion

Social Stories or Scripts

z Popularized

Power Cards
z Power

by Carol Gray, social stories or scripts provide a written lesson plan for particular social situations from the learners perspective. Often times, social stories are focused on skill development for identified, challenging situations (e.g., haircuts).

cards (Gagnon, 2001), involve the development of social stories or scripts that directly involve the individual learners personal interests in an attempt to increase the power of the intervention. For example, if a learner with an ASD was a fan of a particular movie, reference to a preferred character in that movie might be included in the script.

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Social Fluency
z Instruction

Direct Instruction
z

in social fluency requires attention to not just the particular skill, but also to the timing with which the skill is most optimally utilized.

Myles & Southwick (1999) discuss direct instruction as a viable method of social skill instruction and support. DI instructional sequence includes
Rationale: How and why Presentation: Active and multimodal Modeling: Show what to do Verification: Does the learner understand the skill Evaluation: Does the learner use the skill during DI Generalization: Does the learner use the skill outside DI

Self Monitoring
z Self

Acting Lessons
z For

monitoring involves providing individual learners with specific strategies for monitoring their own social interactions. This may involve counters, check sheets, palm pilots or timers and may be used in conjunction with other strategies.

those learners capable of fully participating in acting lessons, Myles and Southwick (1999), note that the benefits may include opportunities to develop greater expressive range and to better interpret the emotions, feelings and voices of others in a safe, controlled environment.

Meta-Cognitive Strategies
z Sometimes

Use the Skills

z In

referred to as learning to learn strategies, meta-cognitive strategies focus more on teaching social problem solving than on direct skill instruction
STOP Stop, Think, Options, Pick SOCCSs* Situation, Options, Consequences,

Choices, Strategies, <simulations> *(Rosa, 1995)

social skill instruction, try to focus primarily on those skills used 1) most often and 2) with the biggest individual payback. Instruction in social skills that that are infrequently used or for which the payback is less obvious may be particularly challenging for both the learner and the instructor.

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Incidental Strategies
z Effective

Train the NTs

z Remember,

social skill instruction needs to take place across the day and, in particular, outside the context of the instructional settings. Find opportunities throughout the day to promote and reinforce social competence (and approximations).

social skills are bi-directional. Attention may need to be paid to both ends of the interaction.

Leisure and Recreation: The Ultimate Choice Activity

z Leisure

Behavioral Indicators That an Activity Is Leisure Rather Than Work Include:

z

and recreation skills, by definition, require choice in terms of activity, location, duration, time, partners & access. attention to any or all of these factors, what may appear to be leisure activities rapidly become work tasks.

Independent requests for the activity Independent initiation of the activity Unanticipated duration of activity Absence of problematic behavior during activity

z Without

In General
z

TV MA

This presentation contains language of a sexual nature and may be considered inappropriate for younger listeners.

Sex and sexuality, as serious topics for discussion, are ones that many of us would rather avoid than address. This may be even more true when the issue is sexuality and learners with ASD.

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Sexuality Defined
z

Myths about Sexuality

z

Sexuality is an integral part of the personality of everyone: man, woman, and child. It is a basic need and an aspect of being human that cannot be separated from other aspects of human life. Sexuality is not synonymous with sexual intercourse [and it] influences thoughts feelings, actions, and interactions and thereby our mental and physical health (WHO, 1975)

In the community at large, there continue to exist a number of myths regarding sexuality and learners with ASD including:
Persons with ASD and other developmental

disabilities have little or no interest in sex.

Persons with ASDs and other developmental

disabilities are hypersexual.

Persons with ASD are solely heterosexual

But the Truth Is

z

In fact
z

Persons with ASD are sexual beings. However, individual interest in sex or in developing an intimate sexual relationship with another person varies widely across individuals at all ability levels. As such, there is a significant need for individualized, effective instruction for persons with ASD across the ability spectrum.

In two recent studies, (McCabe & Cummins, 1996; Szollo & McCabe, 1995) researchers concluded that individuals who have an intellectual disability have lower levels of sexual knowledge and experience in all areas except menstruation and body part identification when compared to a typical student population.
Watson, Griffiths, Richards, & Dysktra, (2002). Sex Education, In Griffiths, Richards, Federoff, & Watson (Eds.). Ethical Dilemmas: Sexuality and Developmental Disability. (pp 175-225). Kingston, NY: NADD Press

And for the Learner with ASD

z

Sexuality education should be proactive

z

sexuality education is complicated by language and communication problems and social deficits. Unfortunately, while sexual feelings and interest may be high, a primary information source available to neurotypical teens, (i.e., other teens), is generally not available. (Volkmar & Wiesner, 2003)

Griffiths, (1999) notes that most learners with a developmental disability receive sexuality education only after having engaged in sexual behavior that is considered inappropriate, offensive or potentially dangerous. This may be considered somewhat akin to closing the barn door after the horse has run.

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Goals of a comprehensive sexuality education

zProvide

Sexuality Education Abuse and Exploitation

z

accurate information zDevelop personal values zDevelop the necessary social competence

Despite our best efforts, people with developmental disabilities are victims of sexual abuse and exploitation at a rate much higher than that of the NT population. While appropriate education in sexuality issues cannot assure that no person will be the victim of sexual abuse, failure to provide such training would certainly appear to increase the risk.

Sexuality Education Abuse and Exploitation

z

Sexuality Education Abuse and Exploitation

z

Parental (and societal mythologies related to sexual abuse:

There is no real risk Well, he/she would never be in that situation anyway I can ensure 24 protection and guarantee that he/she doesnt even have the opportunity for appropriate sexual relations (denial of individual rights)

Adapted from: Schwier, K.M., & Hingsburger, D. (2000)

As of now, the best defense we can offer individuals with developmental disabilities to be as free from sexual abuse as possible is

A comprehensive sexuality education!

Challenges to Sexuality Education for Learners with ASD.

z z z

Challenges to Supporting Adults

z Discontinuous

z z

The social dimension of sexual behavior Differentiation between public and private behavior and reality v. fantasy Ensuring the maintenance of learned skills, particularly those associated with sexual safety Balancing individual safety with personal respect and individual rights Issues related to law enforcement

services z Dearth of services z Limited interest z Staffing concerns z Access to adequate medical services z Issues with the criminal justice system z Substance abuse issues

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Quality of Life is Not a New Concept

Quality of Life as a Transition Outcome

Not life, but good life, is to be chiefly valued.

Socrates (469 BC 399 BC)

QOL as a human right?

All persons enjoy the right to be left alone, [ ] the privilege of an individual to plan his own affairs, to shape his own life as he thinks best, do what he pleases, go where he pleases [ ] the freedom to walk, stroll or loaf.
Supreme Court Justice William O. Douglas (1973)

But what is meant by Quality of Life?

What does QOL mean? (R. Schalock, 2001)

z Quality

But the interaction of these core life conditions is extremely complex, generally non-linear and, at least in part, idiosyncratic.
Physical Well-Being Self-Determination Emotional Well-Being

of life is a term used to describe a temporal condition of personal satisfaction with such core life conditions as physical well-being, emotional well-being, interpersonal relations, social inclusion, personal growth, material well being, selfdetermination, and individual rights.

Material Well-Being

Interpersonal Relations

Personal Growth Rights

Social Inclusion

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For example
30 25
# of core people

We subsequently can operationally defining QOL by what it is by using certain core indicators indicators For Example:
Life Condition

Physical Well-Being Physical Health

Social Inclusion Community Participation Community Roles Social Supports

Material Well-Being Finances Employment Housing

SelfDetermination

20 15 10 5 0 0+ 6+ 11+ 16+ 21+ 26+ 31+ 36+ 5 year age blocks QOL Measure

Autonomy and Control Choices Person Centered

Examples of Core Indicators

Access to Health Care Access to Leisure

Schalock, Robert (2001)

Choice, Control, and Competence in QOL: CHOICE

Choice, control and competence in QOL

The ability to make uncoerced choices and have those choices honored is integral to ones perception of QOL. From the moment we wake up each day we are presented with choice making opportunities that may impact our lives. Should I hit the snooze? Should I have breakfast? What should I wear today? And so on How well we make these choices, and how frequently our choices are, if not granted, at least acknowledged, greatly contributes to our personal sense of well being: our Quality of Life

A World of Choices
Regular
zNo

Decaf

Choice, Control, and Competence in QOL: CONTROL

z We

Cream

zCream zHalf

& Half Milk

zNo

zWhole z2% z1%

Sweetener Sugar Sugars & Low Sweet in the Raw

Milk Milk

zOne zTwo

zSkim zNondairy zNondairy zNondairy zFlavors zSoy

zSweet

Regular Lite Flavors

zNutra zSugar

Results in a total of 144 different possible cups of coffee.

Lite

all desire some degree of control over our fates. Much of this sense of control we get by making or, at least, participating in decisions that directly impact us. The more control we exhibit over decisions relevant to our lives, the more satisfied we feel as a person and the greater our sense of well being: our Quality of Life.

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Choice, Control, and Competence in QOL: COMPETENCE

z

What variables are most likely to enhance the QOL of different individuals at different times in their lives?
Choice Childhood Middle School Transition Young Adult Adult
Simple either/or choices

The interplay between choice and control is an area called competence. We generally chose to engage in tasks where we have some demonstrated or emerging level of proficiency. We may control the situation along such parameters as how long we work on a task, whether we work in public or in private, or whether we give up on a task all together. The better we are at some personal and public assortment of tasks, the better our sense of well being: our Quality of Life.

Control
Limited

Competence
Access to tangibles Access to tangibles self scheduling & monitoring
Job sampling outcomes, access to tangibles x settings, self sched. Job w/ career path, access to tangibles x settings, self sched., desired social life

Development of choice Intermittent making skills & repertoire Dignity of Failure becomes issue Where to work, live, eat, vote, etc. Risk/ Benefit Analysis Where to work, live, eat, vote, sleep with, etc. Intermittent across multiple settings Moderate across settings & routines

Significant

A life

Some final thoughts on QOL

happiness among people with profound multiple disabilities can be defined, reliably observed, and systematically increased supporting the fact that the contributions of behavior analysis for enhancing the quality of life among people with profound and multiple disabilities may be increased significantly.
C. Green & D. Reid, 1996

But what is happiness except the simple harmony between a man and the life he leads.
Albert Camus (1913 - 1960)

That's the difference between me and the rest of the world! Happiness isn't good enough for me! I demand euphoria!
Calvin, speaking to Hobbs

If I had to live my life again, I'd make the same mistakes, only sooner.
Tallulah Bankhead (1903 - 1968)

Oscar, know you know that that is not good for you! When I look back on the best times on my life, none of them were good for me!
Felix Unger and Oscar Madison The Odd Couple

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