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ALLIGNING ASSESSMENT DATA TO ENHANCE QUALITY OF LIFE OUTCOMES IN PERSON
WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITY
Sabrina Donina, FoBAP a marchio Anffas,Luigi Croce, Università Cattolica del Sacro Cuore Marco Lombardi, HoGent University
Referral and Taking in Responsibility
AssessmentDesires and Expectation
s
Personal characteristi
cs
IQ & AB Functioning Assessment & Classification
Health Assessment (medical & nursing)
Environmental
AssessmentIiving setting
Support Needs
SIS
Current QoL
POS
Functioning Profile Strenghts & Limitations +/-
Project
Ecological Balance
General Life Aim/Target
Support Objectives
Supports strategiesPlan Programs
OutcomesPersonal (POS) Functional Clinical
Project Synthesis
Case Conceptualization& Framing
Report
Report
Report
Report
INPUT
THROUGHPUT
OUTPUT
EcologicalMatrix
Matrice dei Sostegni
SupportMatrix
From Schalock, 2012, Gardner, 2009, modified
LIFE DESIGN
Claes 2011; Croce 2013 presentation
s3
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
5
What is important to the person?
Subject: male 36 years old
6
• I like to go out for walks PHYSICAL WELL BEING
EMOTIONAL WELL-BEING
MATERIAL WELL-BEING
PERSONAL DEVELOPMENT
SELF-DETERMINATION
• I like to go to the church and sing with the choirSOCIAL INCLUSION
• I like to chat with my caregiversINTERPERSONAL RELATIONS
• I like to be free to move and walk wherever I wantRIGHT
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Person 1: male 36 years old
9
PHYSICAL WELL BEING
EMOTIONAL WELL-BEING
MATERIAL WELL-BEING
• Learning domestic skills • Learning personal skills
PERSONAL DEVELOPMENT
• More opportunity to choose what he want to doSELF-DETERMINATION
• More opportunity to go outSOCIAL INCLUSION
• Learning social skills to improve his relations INTERPERSONAL RELATIONS
RIGHT
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
12
Subject: male 36 years old
RICEZIONE
ESPRES
SIONE
SCRITT
URA
COMUNICAZIONE
PERSO
NALE
DOMESTICO
COMUNITA'
ABILITA' Q
UOTIDIANE
RELAZIO
NI INTE
RPERSO
NALI
GIOCO - TEM
PO LIBER
O
REGOLE
SOCIALI
SOCIALIZ
ZAZIO
NE
SCALA
COMPOSITA
0
20
40
60
80
100
120
Vineland Adaptive Behavior Scale 2° edition (Sparrow et al., 1984)
13
Aberrant Behavior Checklist (Aman et al., 1985)
• Impulsive (acts without thinking)• Does not stay in seat (during lesson, training session,
meals, etc.)• Will not sit still for any length of time• Easily distractible• Disobedient, difficult to control • Deliberately ignores directions • Disturbs others • Repetitive Speech • Repeats a word or phrase over and over
14
Person 1: male 36 years oldPHYSICAL WELL BEING
• To be always smiling• Appropriate behavior with the others EMOTIONAL WELL-BEING
• Not able to manage his spare timeMATERIAL WELL-BEING• Low attention level (few seconds)• Not able to stay in seat during a training; ignore
istructions• Imitative skills
PERSONAL DEVELOPMENT
• Low attention level (few seconds)SELF-DETERMINATION
• No social rules SOCIAL INCLUSION
• Not compliance during a conversation• To be always smiling
INTERPERSONAL RELATIONS
RIGHT
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
17
Subject: male 36 years old
• Moderate intellectual disability• Attention Deficit Hyperactivity Disorder• Psychotic disorder• Epilepsy unspecified, without status
epilepticus• Enuresis
18
Person 1: male 36 years old• High risk to fall on the ground PHYSICAL WELL BEING
EMOTIONAL WELL-BEING
• Clothes always wet (enuresis)MATERIAL WELL-BEING
• Many difficult to listen to instructions(ADHA)PERSONAL DEVELOPMENT
• Very low of attention levels (ADHD)SELF-DETERMINATION
SOCIAL INCLUSION
• Problems to mantain relations (ADHD)INTERPERSONAL RELATIONS
• Not allow to stay alone (ADHD) • Stigma (enuresis)RIGHT
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
21
-4
-3
-2
-1
0
1
2
3
4
International Classification of Functioning (WHO,2001): ENVIRONMENTAL PROFILE
SUPPORT AND RELATIONSHIP ATTITUDES
22
Subject: male 36 years old• Health professionals satisfy his needs PHYSICAL WELL BEING
• Immediate family doesn’t support him and doesn’t tolerate his behaviorsEMOTIONAL WELL-BEING
• Immediate family doesn’t provide to his material needs MATERIAL WELL-BEING
• Staff care want to teach him skills• Immediate family is not interested in teaching new skills PERSONAL DEVELOPMENT
• Immediate family doesn’t support his decision taking SELF-DETERMINATION
SOCIAL INCLUSION
• Good relations with care staff INTERPERSONAL RELATIONS
RIGHT
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
25
PERSON
AL DEVELOPM
ENT
SELF-DETERMIN
ATION
INTERPERSO
NA
L RELATIO
NS
SOCIAL IN
CLUSION
RIGHT
EMO
TION
AL WELL-BEIN
G
PHISICAL WELL-BEIN
G
MATERIAL W
ELL-BEING
0
2
4
6
8
10
12
14
16
18
PERSONAL OUTCOMES SCALE (van Loon et al., 2008)
Ecological Variables Quality of Life Domains
PWB MWB EWB SD PD SI IR RE
What is important to the
Person?
Personal Goals and Preferencesgeneral
Personal Goals and Preferencesspecific
What is important for the
Person?Support Needs
Items
1. Home living2. Community
living3. Lifelong
Learning4. Occupancy5. Health and
Safety6. Social7. Protection and
Advocacy
8. Medical excp.
9. Behavioral excp.
Adaptive Behavior
Particip. incl.
Functioning strenghtsFunctioning limitations
Health Physical HealthMental Health
Context FacilitatorsBarriers
QoL level POS scoresSupport Objectives
ISP: Individual Support Plan Concise ReconceptualizationEcological Matrix 1: From Assessment to Support Objectives (INPUT)
Ecological Matrix
Iniziativa approvata e co-finanziata Ministero Lavoro e Politiche Sociali ex
legge 383/2000, art. 12, lett. f bando 201326
Defining Support Objectives
Iniziativa approvata e co-finanziata Ministero Lavoro e Politiche Sociali ex
legge 383/2000, art. 12, lett. f bando 201328
29
SIRIUS RIGEL
ANTARES
ALTAIR
BELLATRIX
VEGA
BETELGEUSE
30
Thank you!!!