intellectual and neurodevelopmental disabilities in … verdugo.pdf · sonia f huqiqde z irene hi...

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

1

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


Personal

(In)Competence

Environment

Personal

Competence

Focus on environment/context,

not fixing the person;

Strengths-based

Emphasizes supports, not

programs


Health Condition

(disorder/disease)

Interaction of Concepts

ICF (WHO, 2001

Environmental

Factors

Personal

Factors

Body function&structure

(Impairment) Activities

(Limitation)

Participation

(Restriction)


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.


Quality of Life

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)

14

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….

17

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


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


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


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).


• BASED ON OUTCOME INDICATORS AND EVIDENCE-BASED EVALUATION

• ITS MAIN USE IS TO PROVIDE THE BEST EVIDENCE AVAILABLE FOR CLINICAL AND ORGANIZATIONAL DECISIONS


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

https://www.researchgate.net/profile/Miguel_Verdugo/publications



https://usal.academia.edu/MiguelVerdugo



http://inico.usal.es/c138/instrumentos-evaluacion.aspx




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)


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


political and public life


cultural life

Relationship among QOL Domains, QOL Indicators, and Convention Articles


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

http://sid.usal.es/

http://sid.usal.es/






intellectual and neurodevelopmental disabilities in … verdugo.pdf · sonia f huqiqde z irene hi...

Documents