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INTELLECTUAL AND NEURODEVELOPMENTAL DISABILITIES IN
THE PERSPECTIVE OF QUALITY OF LIFE [Le disabilità intellettive e i disturbi del neurosviluppo nella prospettiva della qualità della vita]
Miguel A. Verdugo
INICO, University of Salamanca, Spain
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Palacongressi di Rimini 02-03 Dicembre 2016
2
Evolution of the concept of Disability
Historically, disability was understood within a model that was an extension of the medical model, which conceived health as an interiorized state and health problems as an individual pathology; a problem within the person.
Disability was understood as a characteristic of the person; as
residing with the person.
The person was seen as broken, diseased, pathological, atypical, or aberrant; as outside the norm.
Perhaps unavoidably, people with disabilities were, consequently, associated with numerous negative stereotypes.
M.A.Verdugo Univ. Salamanca, Spain 3
By the late 1970s individual pathology models offered a far too narrow perspective for effectively describing, understanding, and addressing the problems of people experiencing chronic or pervasive health issues, including disability.
In 1980, WHO introduced the ICIDH perspective for
describing the impact of a health condition or pathology on human functioning were: (a) the exteriorization of a pathology in body anatomy and functions; (b) objectified pathology as expressed in the person’s activities (e.g. adaptive behavior skills), and (c) the social consequences of pathology (e.g. participation in social life domains).
4 M.A.Verdugo Univ. Salamanca, Spain
ICF of WHO (2001) recognized that besides the impact of health condition factors (pathology), contextual and environmental factors are of pivotal importance for understanding human functioning. Human functioning is best understood in the context of a
person-environment fit or interaction model.
5 M.A.Verdugo Univ. Salamanca, Spain
Personal
(In)Competence
Environment
M.A.Verdugo Univ. Salamanca, Spain 6
Personal
(In)Competence
Environment
Personal
Competence
Focus on environment/context,
not fixing the person;
Strengths-based
Emphasizes supports, not
programs
M.A.Verdugo Univ. Salamanca, Spain 7
Health Condition
(disorder/disease)
Interaction of Concepts
ICF (WHO, 2001
Environmental
Factors
Personal
Factors
Body function&structure
(Impairment) Activities
(Limitation)
Participation
(Restriction)
M.A.Verdugo Univ. Salamanca, Spain 8
9
Viewing intellectual disability as a function of the interaction between personal competence
and environments or contexts. Places greater emphasis on the need to provide SUPPORTS
and accommodations to enable persons to, in fact, function within that environment.
M.A.Verdugo Univ. Salamanca, Spain 10
Quality of Life
11
Idea, Concept, Model, Theory Introduced initially as a sensitizing notion (80s-90s), the concept has evolved
FROM:
12
Idea, concept
• TO a measurable construct
A ‘model’ that describes
what
• TO a framework that suggests how
An idiographic
focus
• TO multi-system perspective
A theory
• TO an action-oriented change agent
Development of a more detailed and empirically based
model that is being used internationally to assess
personal outcomes, guiding organizations’ practices and
policies, and quality improvement strategies
Multidimensional phenomenon composed
of core domains
Influenced by personal characteristics and
environmental factors.
These core domains are the same for all people, although they may vary individually in relative value and importance.
Assessment of QOL domains is based on culturally sensitive
indicators.
Definition
(Schalock et al., 2010)
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QoL
EW
PW
MW
SI
IR
PD
SD
R
MULTIDIMENSIONAL MODEL
Quality of Life Theory (Schalock, R.L., Verdugo, M.A., Gomez, L.E. & Reinders, H.S. (2016). Moving Us Toward a Theory of Individual Quality of Life. American Journal
on Intellectual and Developmental Disabilities, 121 (1), 1–12. doi: 10.1352/1944-7558-121.1.1
)
CURRENT
CONCEPTUAL
AND
MEASUREMENT
MODEL
Gómez, L. E., Verdugo, M. A., Arias, B., & Arias, V. (2010). A comparison of alternative models of individual quality of life for social service recipients. Social Indicators Research, 101, 109–126. Jenaro, C., Verdugo, M. A., Caballo, C., Balboni, G., Lachapelle, Y., & Otrebski, W. (2005). Cross-cultural study of person-centered quality of life domains and indicators. Journal of Intellectual Disability Research, 49, 734-739. Schalock, R. L., Verdugo, M.A., Jenaro, C., Wang, M., Wehmeyer, M., Xu, J., & Lachapelle, Y. (2005). Cross-cultural study of quality of life indicators. American Journal on Mental Retardation, 110, 298-311. Wang, M., Schalock, R. L, Verdugo, M. A., & Jenaro, C. (2010). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115, 218-233. Verdugo, M. A., Arias, B., Gómez L. E., & Schalock, R. L. (2010). Development of an objective instrument to assess quality of life in social services: Reliability and validity in Spain. International Journal of Clinical and Health Psychology, 10(1), 105-123. And………..
Schalock, R.L., Verdugo, M.A.,
Gomez, L.E. & Reinders, H.S. (2016).
Moving Us Toward a Theory of
Individual Quality of Life. American
Journal on Intellectual and
Developmental Disabilities, 121 (1), 1–
12. doi: 10.1352/1944-7558-121.1.1
A SYSTEMS PERSPECTIVE FOR INDIVIDUAL QOL IMPROVEMENT
INDIVIDUAL Personal outcomes / Evidence based practices
ORGANIZATION Organizational outcomes/ Orgs. Transformation
PUBLIC POLICY New approach….
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Quality of Life Moderator and Mediator Variable Classes and Associated Variables
QOL Moderator/Mediator Class Specific Variables Studied to Date
QOL Moderators: -Personal Demographics -Organization Culture -Family-Unit Factors
-Gender, race, intellectual functioning,
adaptive behavior, social economic status -Level of personal involvement of the client,
level of personal growth opportunities -Family income, size of family, family geographical location, religious preference,
family structure
QOL Mediators: -Personal Status -Provider System -Community Factors
-Residential platform, employment status,
health status, and level of self-determination
and subjective well-being -Services, individualized supports -Normative expectations, attitudes, media
impact A moderating factor alters the relation between two variables and thus modifies the form or strength of the relation.
A mediating factor influences the relation between the independent
variable and outcome and exhibits indirect causation, connection, or relation
Quality Enhancement Strategies
Systems Level QOL-Related Principles Exemplary QOL
Enhancement Strategies
Individual (Microsystem) Empowerment Skill development Involvement
-Decision making, choice making,
risk taking, goal setting, self-
advocacy, self-management -Functional training and use of
technology to enhance cognitive,
social, and practical skills -Participation, inclusion,
knowledge sharing, ability sharing
Quality Enhancement Strategies
Systems Level QOL-Related Principles Exemplary QOL
Enhancement Strategies
Organization (Mesosystem) Opportunity development Safe and secure
environments
Supports alignment
-Integrated employment,
inclusive education,
community-based, less
restrictive living options,
community integration
activities, transportation,
social networks -Environments characterized
by safety (seguridad),
security (protección),
predictability, and personal
control -Aligning individualized
supports to personal goals
and assessed support needs
Security: Protección
Safety: Seguridad
Quality Enhancement Strategies
Systems Level QOL-Related Principles Exemplary QOL Enhancement
Strategies
Society (Macrosystem) Accessibility Attitudes Environmental
enrichment
-Ensuring human rights (e.g.
empowerment and inclusion) and
legal rights (e.g. citizenship, due
process) -Knowledge and positive
interactions -Nutrition, cleaner environments,
reduced abuse and neglect, safer
environments, adequate housing
and income
M.A.Verdugo Univ. Salamanca, Spain 22
USING A QUALITY OF LIFE FRAMEWORK TO INTEGRATE
SUPPORT NEEDS INTO INDIVIDUAL SUPPORTS PLANNING
EBP in psychology is the integration of the best available research with clinical expertise in the context of patient characteristics, culture, and preferences. (APA Presidential Task Force
on Evidence-Based Practice; American Psychologist, 2006, 61 (4), p-271)
EBP are practices that are based on current best evidence that is obtained from credible sources that used reliable and valid methods and based on a clearly articulated and empirically supported theory or rationale (Schalock, Verdugo & Gómez, 2011).
M.A.Verdugo Univ. Salamanca, Spain 23
• BASED ON OUTCOME INDICATORS AND EVIDENCE-BASED EVALUATION
• ITS MAIN USE IS TO PROVIDE THE BEST EVIDENCE AVAILABLE FOR CLINICAL AND ORGANIZATIONAL DECISIONS
M.A.Verdugo Univ. Salamanca, Spain 24
Outcome Indicators: Individual (QoL Scales or dimensions of human functioning) and Organizational (OEES) results
SCALES: 8 DOMAINS, with EXCELLENT psychometric properties
25
Intellectual Disabilities, adults (mild and moderate ID)
Self Report and Report of other persons
Significant IDD Report of other persons
Spanish validation; English version
Spanish validation; Italian, French, English, and other languages adaptations
ScalaSan Martin
Valutazione della
qualità della vita
delle persone con
disabilità gravi
Miguel Ángel Verdugo Laura E. Gómez
Benito Arias Mónica Santamaría
Ester Navallas
Sonia Fernández
Irene Hierro
INICO - FOSM © 2014
QUALITY OF LIFE ASSESSMENT TOOLS (Children and Adolescents) (INICO, Universidad de Salamanca)
8-11 years All students
12-16 years All students
11-19 years DI/DD, DA
4-21 years ID
KidsLife
! !! !!
!
!
Evaluación*de**la*calidad*de*vida**
de*niños*y*adolescentes**con*discapacidad*
intelectual*
©*M
etk
alova*|*D
reamstim
e.com*
QUALITY OF LIFE ASSESSMENT TOOLS (ADULTS)
Social Services Spanish, Italian,
and others
https://www.researchgate.net/profile/Miguel_Verdugo/publications https://usal.academia.edu/MiguelVerdugo http://inico.usal.es/c138/instrumentos-evaluacion.aspx
ASK ME Survey (Bonham et al., 2004) E
PERSONAL OUTCOMES Scale (Van Loon
et al., 2008) E, and many others
MY LIFE: PERSONAL OUTCOMES Index
(PDD, Alberta, 2010) E
Co
rre
cció
n
PROVIDERS PROFILE: Using Gencat in Catalonia, Spain
Miguel Ángel Verdugo Alonso 29
inte
rpre
tac
ión
Puntuaciones individuales obtenidas por un/ a
usuario/ a Puntuaciones obtenidas por un servicio
30
FRAMEWORK TO INTEGRATE SUPPORT NEEDS INTO INDIVIDUAL SUPPORTS PLANNING
QUALITY
OF LIFE
DOMAIN
Most
Important
GOALS AND
SUPPORT
NEEDS TO AND
FOR the person (important to the person
is based on personal
goals and expressed
support needs; important
for the person is based on
assessed support needs
on the SIS)
SUPPORT
STRATEGIES
based on a
system of
supports A system of supports
includes:
*natural supports
*cognitive supports
*prosthetics
*skills and knowledge
*environmental
accommodation
*personal assets
*positive behavior supports
A specific support
strategy needs to be
established for each
goal and support
need
SUPPORT OBJECTIVE
FOR EACH SUPPORT
STRATEGY A support objective integrates
the specific strategy used and
the intended result of that
strategy. Support objectives are
expressed as an action verb such
as use, provide, implement,
advocate for, develop and
access. An example of a support
objective would be “provide a
behavior support plan to
increase incentives” or “to
develop online communities to
increase social interaction and
community participation”.
Monitoring of the ISP
involves determining the
status of each support
objective (on a 3-point
Likert Scale)
Quarterly Review
Evaluation: IMPACT OF
THE SUPPORT
STRATEGIES ON THE
INDIVIDUALS QUALITY
OF LIFE This is an assessment of the
intended results. Evaluating the
efficacy of the support
strategies every three months is
an important element of the ISP.
While a goal may not have been
completely achieved it is
important to consider the
impact that the support
strategies have on the QoL of
the person served.
Personal
Development
Important to:
Important for:
Self-Determination
Important to:
Important for:
31
USING A QUALITY OF LIFE FRAMEWORK TO PROMOTE ORGANIZATIONAL CHANGE
Systems Level Throughput Outcome/Output Input
Value-Based Policies
Resources
Macrosystem
Service Delivery Framework
Administrative Principles
Societal Outcomes
Organization Outputs
Systems Change Indicators
Assessed Support Needs
Personal Goals and Desires
Individual
A System of Supports
Personal Outcomes
Organization
Organization Outputs
Resources Tacit and Explicit Knowledge Time Social and Financial Capital Technology
Organization
Services
Managerial Strategies
A systems approach to horizontal and vertical alignment
32
Change strategies, change catalysts, and characteristics of redefined ID/DD organizations
Redefined ID/DD Organizations:
Community Based
Horizontally Structured
Support Coordinators
Evidence-Based Practitioners
Knowledge Producers
Quality Improvement Oriented
CHANGE CATALYSTS:
Values
Leadership
Technology
Empowerment
CHANGE STRATEGIES:
Thinking Styles
Personal Outcomes and Organization Outputs
High Performance Teams
A Systems of Supports
Evidence-Based Practices
Performance-Based Management System
Innovation
Overcoming Resistance to Change
33
1st step: Changing language and thought 2nd step: A framework to concept and
measurement 3rd step: Implementaton strategy: QoL
improvement 4rd step: Evaluation: outcomes evaluation
The Transformational Process
International Research Consortium on Evidence-Based Practices
(2013)
Schalock, R. L. & Verdugo, M.A. (2013). The transformation of disabilities organizations. Intellectual and Developmental Disabilities, 2013, 51(4), 273-286. Schalock, R.L., Lee, T., Verdugo, M.A., Swart, K., Claes, C., Van Loon, J. & LEE, Ch-s. (2014). An evidence-based approach to organization evaluation and change in human service organizations evaluation and program planning. Evaluation and Program Planning, 45, 110-118.
Performance-Based Perspectives and Evidence-Based Indicators
CUSTOMER PERSPECTIVE Aligns services/supports to identified support needs Reports the number of clients living or working in more independent, productive, and community-integrated environments Measures personal outcomes Reports and analyses aggregated personal outcomes Uses technology to enhance personal outcomes
GROWTH PERSPECTIVE Articulates the organization’s mission and intended results Enters into partnerships Develops program options Utilizes and evaluates high performance teams Monitors job satisfaction and develops job enrichment programs
FINANCIAL PERSPECTIVE Compares units costs across different locations and service delivery platforms Reports percentage of budget allocated to client-referenced supports Monitors the relationship between social capital and agency-based fiscal capital Uses fixed and variable cost data to establish a baseline cost rate Analyses overhead rate to increase efficiency
INTERNAL PROCESSES PERSPECTIVE Horizontally aligns input, throughput, and output components Vertically aligns an organization’s input, throughput, and output components to the corresponding individual-level input, throughput, and output components Demonstrates relationship between units of service/support provided and the clienteles’ assessed support needs Uses data related to personal outcomes and organization outputs for multiple purposes Uses evidence-based indicators for continuous quality improvement
37
Quality Improvement
Loop
39
THE QUALITY OF LIFE CONCEPT AND
UNITED NATIONS CONVENTION ON THE
RIGTHS OF PERSONS WITH DISABILITIES
Verdugo, M.A., Navas, P., Gómez, L.E. y Schalock, R. (2012).The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56(11), 1036-1045. Navas, P., Gómez, L. E., Verdugo, M. A. y Schalock, R. L. (2012) Rights of people with intellectual disabilities: implications of the United Nations Convention. Siglo Cero, 43(232), 7-28.
40
• Marks the culmination of decades of struggle by people with disabilities to ensure that their basic human rights as citizens are respected and the barriers to their participation in society are removed.
• Validates full and equal access to the Universal Declaration of Human Rights promulgated in 1948.
• Provides a unique opportunity for every country and its citizenry to think about the quality of life of its citizens with disabilities, and to make a fresh start in fixing its priorities.
Peter Mittler, 2012
IMPORTANCE OF THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS
WITH DISABILITIES (CRPD)
Miguel Ángel Verdugo Alonso 41
Quality of Life Domain Exemplary QOL Indicators UNCRPD Articles Personal Development Education status
Personal skills
Adaptive behavior
Article 24-Education
Self-Determination Choices/decisions
Autonomy
Personal control
Personal goals
Article 14-Libertu and
security of person
Article 19-Living
independently and being
included in the community
Article 21-Freedom of
expression and opinion, and
access to information
Interpersonal Relations Social networks
Friendships
Social activities
Relationships
Article 23-Respect for home
and family
Article 30-Participation in
cultural life, recreation,
leisure, and sport
Social Inclusion Community integration/
participation
Community roles
Supports
Article 8-Awareness-raising
Article 9-Accssibility
Article 18-Liberty of
movement and nationality
Article 19-Living
independently and being
included in the community
Article 20-Personal mobility
Article 29-Participation in
political and public life
Article 30-Participation in
cultural life
Relationship among QOL Domains, QOL Indicators, and Convention Articles
Miguel Ángel Verdugo Alonso 42
Rights Human (respect, dignity,
equality)
Legal (legal access, due
process)
Article 5-Equality and non-discrimination
Article 6-Women with disabilities
Article 7-Children with disabilities
Article 10-Right to life
Article 11-Situations of risk and humanitarian emergencies
Article 12-Equal recognition before the law
Article 13-Access to justice
Article 15-Freedom from cruel or unusual punishment
Article 22-Respect for privacy
Emotional
Well-Being
Safety and security
Positive experiences
Contentment
Lack of stress
Article 16-Freedom from exploitation, violence, and abuse
Article 17-Protecting the integrity of the person
Physical Well-
Being
Health and nutrition status
Recreation
Leisure
Article 16-Freedom from exploitation, violence, and abuse
Article 25-Health
Article 26-Habilitation and rehabilitation
Material Well-
Being
Financial status
Employment status
Housing status
Possessions
Article 27-Work and employment
Article 28-Adequate standard of living and social protection
Relationship among QOL Domains, QOL Indicators, and Convention Articles
Human Rights and Quality of Life:
An Emergent Paradigm
43
• An emergent paradigm is one that: (a) calls for prompt action, (b) arises as a
natural or logical consequence, and (c) provides a template for critical
thinking and action.
• The quality of life concept provides an emergent paradigm for
implementing the UNCRPD since the concept:
Reflects the values inherent in the Convention Principles and Articles
Shows the specific direction for the delivery of services and supports
Allows for the alignment of the Convention Arts with domains of personal
well-being (i.e. a life of quality) and provision of individualized supports
Provides a valid conceptualization and measurement framework to assess
personal outcomes reflective of a holistic approach to individuals
Provides a template to monitor and assess the status of the Convention arts
Has been shown to be a catalyst for organization and systems
transformation
FAREWELL
Think Different. Because the people who are crazy enough to think they can change the world ... are the ones who change it.
Steve Jobs (Biografía de Walter Isaacson)
The world is a dangerous place to live; not because of the people who are evil, but because of the people who don't do anything about it.
Albert Einstein
Al Etmanski
PLAN Institute was created by Planned Lifetime Advocacy Network.
Canada.
System versus Person
Transformation from worm to Butterfly
¡¡GRAZIE MILLE!!
http://sid.usal.es
http://inico.usal.es
https://www.researchgate.net/profile/Miguel_Verdugo/publications https://usal.academia.edu/MiguelVerdugo