1

2

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)

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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

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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

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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!!!