1. Self-Determination and Positive Health Care Transitions for Youth with Special Health Care Needs
Michael L. Wehmeyer, Ph.D.
Ross and Marianna Beach Distinguished Professor in Special Education
Director and Senior Scientist, Beach Center on Disabilty
University of Kansas

2. The Emergence of Strengths-based Models of Disability
1980- International Classification of Impairments, Disabilities, and Handicaps (ICIDH)
2001- International Classification of Functioning, Disability and Health (ICF)

3. International Classification of Impairments, Disabilities, and Handicaps (ICIDH)(1980)
Prior WHO classification systems were intended to provide taxonomies of impairments/diseases/disorders for diagnosis (the International Classification of Diseases, or ICD, still principle tool used in the world).
ICIDH forwarded as a manual of classification of the consequences of disease, injuries, and other disorders and of their implications for the lives of the person experiencing these.
Examined impact of health condition on human functioning.

4. International Classification of Impairments, Disabilities, and Handicaps (ICIDH)
ICIDH introduced three “distinct and independent classifications”:
1. Problems in body functions and/or anatomy, resulting in impairment;
2. Related problems in the person’s activities, resulting in disability;
3. Problems in performing social roles in society, resulting in a handicap (World Health Organization, 1980, p. 30).
“Externalization” of pathology

5. International Classification of Impairments, Disabilities, and Handicaps (ICIDH)
Criticisms
The ICIDH did not adequately clarify the role and interrelationships of environmental factors in the definition and development of [disablement].
Includes physical and social environment.
Unidirectional and allegedly causal nature of ‘disabling’ process: disease/condition to impairment, to disability, to handicap.
Use of negative language and stigmatizing effects
[Handicaps] as a type of classification failed to capture the issues pertaining to not only environmental factors, but also personal factors.
Disability still seen as a class in its own, and not on a continuum of human functioning.

6. International Classification of Functioning, Disability, and Health (ICF)(2001)
In response to criticisms of the ICIDH (and as a logical next step in the process), WHO introduced the ICF in 2001.
A universal classification of disability and health for use in health and health related sectors.
“ICF is named as it is because of its stress is on health and functioning , rather than on disability. Previously, disability began where health ended; once you were disabled, you where in a separate category. We want to get away from this kind of thinking. We want to make ICF a tool for measuring functioning in society, no matter what the reason for one's impairments. So it becomes a much more versatile tool with a much broader area of use than a traditional classification of health and disability.”
“This is a radical shift. From emphasizing people's disabilities, we now focus on their level of health.”

7. International Classification of Functioning, Disability, and Health (ICF)(2001)

8. International Classification of Functioning, Disability, and Health (ICF)(2001)

9. Changing Expectations: Changing Understanding
Disability
Personal
Incompetence

10. Changing Expectations: Changing Understanding
Environment
Personal
Competence

11. Changing Expectations: Changing Understanding
Environment
Disability
Personal
Competence

12. Implications of Changing Understandings of Disability
Strengths-based
Part of, not apart from, typical human functioning
Focus on environment/context, not fixing individual
Emphasizes supports, not programs
Increased emphasis on electronic and information technology
Personalized learning
Focus on self-determination

13. VIA Classification of Strengths
© Copyright VIA INSTITUTE ON CHARACTER. ALL RIGHTS RESERVED.

14. Supports Resources and strategies that: Personalized array of supports
promote the interests and causes of individuals with or without disabilities;
enable them to access opportunities, information, and relationships inherent within integrated work and living environments;
result in enhanced interdependence, productivity, community inclusion, life satisfaction, and human functioning.
Personalized array of supports

15. An Array of Supports

16. Personalized Learning
Changing understandings of disability and advances in technology are moving us toward a system focused on personalized learning.
Personalized learning environments are characterized by:
An emphasis on student-directed learning
Integration of technology into all aspects of the learning experience
Promotes student choice and self-determination
Repeated assessment through the learning experience.

17. Personalized Learning
Digital Talking Books.
Smartphones, iPads, & Tablet PCs
Cloud-based apps
3D Printing
The Internet of Everything

18. Smart Transportation Systems

19. Implications for Transition Services
From Career Development to Life Design
“Career theories and vocational guidance techniques must be reformulated to fit the post-modern economy” (Savickas et al., 2009, p. 240).
“Theoretical models are needed that emphasize human flexibility, adaptability, and life-long learning...” (Savickas et al, 2009, p. 240).
Life-designing emphasizes enabling young people to become experts in ‘constructing’ their own career paths, taking on transitions, addressing threats and opportunities, and designing a better life (Nota & Rossier, 2009).
From “Special Education” to Secondary Education
Savickas, M.L., Nota, L., Rossier, J., Dauwalder, J-P., Duarte, M.E., Guichard, J. … van Vianen, A.E.M. (2009). Life designing: A paradigm for career construction in the 21st century. Journal of Vocational Behavior, 75(3),
Nota, L., & Rossier, J. (2014). Handbook of the life design paradigm: From practice to theory, from theory to practice. Gottingen: Hogrefe

20. Implications for Transition Educators
Presume competence.
Promote self-determination.
Involve young people in planning for their future.
Emphasize goal setting and problem solving.
Consider the role of hope, optimism, resilience, coping, and so forth in the lives of young people with disabilities.

21. What is Self-Determination?
Self-Determination is a dispositional characteristic manifested as acting as the causal agent in one’s life. Self-determined people (i.e., causal agents) act in service to freely chosen goals. Self-determined actions function to enable a person to be the causal agent is his or her life.
Causal agency: To make or cause something to happen in one’s life.
Volitional action: Making a conscious choice or decision with deliberate intention.

22. Self-Determination and Determinism
The philosophical doctrine of determinism posits that actions are caused by events or natural laws that precede or are antecedent to the occurrence of the action. Behavior, then, is governed by these other events or natural laws.

23. Self-Determination and Determinism
Self-determinism, or self-determination, implies that individuals cause themselves to act in certain ways, as opposed to someone or something else ‘causing’ us to act in certain ways
People who are self-determined embody the characteristic or quality of ‘self-determination,’ a noun referring to the degree to which that person acts or behaves in ways that are self- (instead of other-) caused.

24. Self-Determination and Disability
Within the context of the disability rights and advocacy movement, the construct as a personal characteristic has been imbued with the empowerment and “rights” orientation typically associated with the sense of the term as a national or political construct. Empowerment is a term usually associated with social movements, and typically is used, as Rappaport (1981) stated, in reference to actions that “enhance the possibilities for people to control their lives” (p. 15).

25. Self-Determination and Disability
"People with autism should be treated with the same dignity, respect, and equality as people without autism.” Jean-Paul Bovee "We don't have to be told what self- determination means. We know it is just another word for a life filled with rising expectations, dignity, respect and opportunities.“ Robert Williams

26. What Does the Research Tell Us? Self-Determination Status
Research shows that youth/young adults with disabilities are less self-determined than their non-disabled peers.
It is important, however, not to assume that this in any way reflects the capacity of people with disabilities to become self-determined. The research clearly shows that people with disabilities have many fewer opportunities to make choices and express preferences across their daily lives.

27. What Does the Research Tell Us? Factors Predicting Self-Determination
Social abilities and adaptive behavior skills are related to more positive self-determination.
Choice-making opportunity is a strong predictor of self-determination. Research shows that the environments in which people with autism and/or intellectual disability live or work limit opportunities to make choices and restrict personal autonomy.
Environment is an important factor in considering efforts to enhance self-determination. Research has shown that more restrictive environments limit self-determination and that simply moving from such an environment (e.g., group home to supported living) results in significantly higher self-determination (due to opportunities to make choices, set goals, etc.).

28. What Does the Research Tell Us? Self-Determination and School Outcomes
Multiple studies, including randomized trial studies, have found:
Students with disabilities who are provided instruction to promote self-determination (and related components) become more self-determined.
Promoting self-determination of school-age youth results in:
Enhanced self-determination
Increased transition knowledge and transition-related self-efficacy
Higher academic and transition goal attainment
Increased access to the general education classroom
Teachers who implement strategies to promote self-determination show significantly higher expectations for student success as a result.

29. What Does the Research Tell Us? Self-Determination and Adult Outcomes
Multiple research studies find that a person’s self-determination status predicts higher quality of life.
Self-determination status is positively correlated with more positive post-secondary outcomes, including employment, independent living, and community inclusion for youth with disabilities.
Young adults who are more engaged in personally-valued recreation activities are more self-determined, suggesting a reciprocal relationship between recreation activities and self-determination.

30. What Does the Research Tell Us
What Does the Research Tell Us? Self-Determination and Adult Outcomes (cont.)
Students with cognitive disabilities who leave school as self-determined young people:
Are more independent one year after graduation.
Are more likely to live somewhere other than where they lived in high school one year after graduation.
Are significantly more likely to be employed for pay at higher wages one year after graduation.
Are significantly more likely to be employed in a position that provides health care, sick leave, and vacation benefits three years after graduation.
Are significantly more likely to live independently three years after graduation.
Recent Randomized Control Trial students show a causal relationship between enhanced student self-determination and greater community inclusion and employment outcomes one and two years after graduation.

31. What Does the Research Tell Us
What Does the Research Tell Us? Self-Determination and Student Involvement
Research has shown that students with disabilities are not major players in their IEP/transition planning meetings.
Research has also shown that students with disabilities can learn the skills to be active participants in their IEP/transition planning meetings.
Research suggests that student involvement has a reciprocal effect with self-determination. That is, students who are more self-determined are more likely to be involved in their educational planning, but getting students involved in their planning—independent of their level of self-determination—enhances self-determination.

32. Promoting Self-Determination
Choice-making
Decision-making
Problem-solving
Goal setting and attainment
Self-advocacy
Self-observation, evaluation and reinforcement
Internal locus of control
Autonomous motivation
Self-awareness
Self-knowledge

33. The Emergence of Self-Determination
Enhanced capacity as a result of:
attainment of developmental milestones;
acquisition of component elements.
Opportunity to assume control as a result of:
Autonomy-supportive environments that support student self-directed learning;
frequent experiences of choice and control.
Supports and accommodations.

34. Promoting Self-Determination
Instruction on component elements of determined behavior;
Self-determination curricula and assessment materials;
Student-directed planning materials

35. Choice Making Making a choice = Indicating a preference
Between two or more options

36. Choice Making
Particularly important for childhood/early elementary. Provides opportunity to teach students they have a voice in their education.
Including a choice opportunity within behavioral interventions has been shown to improve outcomes.
People’s preferences change. Just because a student liked something at one time doesn’t mean he or she will like it at another time.
Assess frequently.

37. Promoting Problem-Solving
A problem is an activity or task for which a solution is not known or readily apparent.
Three focal points to instruction in problem solving:
problem identification;
problem explication and analysis;
problem resolution.
Should occur within environments that emphasize;
student’s capacity to solve problems;
promote open inquiry and exploration
encourage generalization.

38. Promoting Decision-Making
Most models of decision making incorporate the following steps:
listing relevant action alternatives;
identifying possible consequences of those actions
assessing the probability of each consequence occurring (if the action were undertaken);
establishing the relative importance (value or utility) of each consequence;
integrating these values and probabilities to identify the most attractive course of action.

39. Goal Setting and Attainment
Goal setting theory is built on the underlying assumption that goals are regulators of human action.
Instructional efforts to promote goal setting and attainment should focus on:
Goal identification and enunciation
Developing objectives to meet goals;
Identifying actions necessary to achieve goals;
Tracking and following progress on goals.
Participation in educational planning and decision-making as ideal generalization mechanism.

40. Promoting Self-Advocacy Skills
Skills needed to advocate on one’s own behalf.
rights and responsibilities;
assertiveness vs. aggressiveness;
communicating effectively (one-on-one, small group)
negotiation, compromise and persuasion;
effective listening;
basic leadership and team skills
Particularly important during secondary education.

41. Promoting Self-Awareness and Self-Understanding
recognition and identification of physical and psychological needs, and how to meet those needs;
identify and communicate own interests, beliefs and values;
understand and accept individual differences;
handling frustration and stress

42. Student-Directed Learning Strategies
Self-instruction, self-monitoring, self-scheduling, self-reinforcement, and self-managed antecedent cue strategies.
Research has shown that interventions using student-directed learning/self-management strategies have led to improved problem solving skills, improved communicative behavior, improved daily living skills, better academic performance, and reductions in disruptive behavior for students with autism spectrum disorders.

43. Efficacy of Interventions to Promote Self-Determination
Data exists to support the efficacy of the following interventions/programs:
Steps to Self-Determination (Hoffman & Field, 1995)
Published by ProEd (
TAKE CHARGE for the Future
Contact Dr. Laurie Powers at the University of Portland
Self-Determined Learning Model of Instruction (Wehmeyer, Palmer, Agran, Mithaug, & Martin, 2000)

44. Efficacy of Efforts to Promote Student Involvement
Data exists to support the efficacy of the following interventions/programs:
Next S.T.E.P. (Halpern, et al., 1997)
Published by ProEd (
Self-Directed IEP (Martin, Huber Marshall, Maxon, & Jerman, 1997)
Information on Zarrow Center at OU website (
Self-Advocacy Strategy (VanReusen et al., 2002).
Contact University of Kansas Center for Research on Learning (
Whose Future is it Anyway? (Wehmeyer et al., 2005).
Available online at OU Zarrow Center (

45. Measuring Self-Determination
The Arc’s Self-Determination Scale (Wehmeyer et al)
Self-report measure of self-determination for students with cognitive disabilities.
AIR Self-Determination Assessment (Mithaug et al)
Student, teacher, and parent report versions
ChoiceMaker Self-Determination Assessment (Martin et al)
Curriculum referenced measure.
Wayne State University Self-Determination Assessment Battery (Field et al.)
Student, parent, teacher versions, observation checklist
All available online at OU Zarrow Center web site (

46. National Gateway to Self-Determination