ICF: turning concepts into practice The Italian experience

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ICF turning concepts into practiceThe Italian
experience

• Andrea Martinuzzi, M.D., Ph.D.
• E. Medea Scientific Institute, Conegliano
  Research Centre
• Research Branch of the WHO-FIC Collaborating
  Centre, Italy
• Disability Italian Network

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Disability is a major public health issue

• 567 Million healthy life years lost per year
• The poorest countries in the world share the
  highest disability burden
• Information paradox The least information for
  countries with greatest need

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UN convention

• Preamble e) Recognizing that disability is an
  evolving concept and that disability results from
  the interaction between persons with impairments
  and attitudinal and environmental barriers that
  hinders their full and effective participation in
  society on an equal basis with others,

Art 1Persons with disabilities include those who
have long-term physical, mental, intellectual or
sensory impairments which in interaction with
various barriers may hinder their full and
effective participation in society on an equal
basis with others
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• Art 25 States Parties recognize that persons
  with disabilities have the right to the enjoyment
  of the highest attainable standard of health
  without discrimination on the basis of
  disability. States Parties shall take all
  appropriate measures to ensure access for persons
  with disabilities to health services that are
  gender-sensitive, including health-related
  rehabilitation.
• Art 26 States Parties shall take effective and
  appropriate measures, including through peer
  support, to enable persons with disabilities to
  attain and maintain maximum independence, full
  physical, mental, social and vocational ability,
  and full inclusion and participation in all
  aspects of life. To that end, States Parties
  shall organize, strengthen and extend
  comprehensive habilitation and rehabilitation
  services and programmes, particularly in the
  areas of health, employment, education and social
  services, in such a way that these services and
  programmes
• Begin at the earliest possible stage, and are
  based on the multidisciplinary assessment of
  individual needs and strengths
• Support participation and inclusion in the
  community and all aspects of society, are
  voluntary, and are available to persons with
  disabilities as close as possible to their own
  communities, including in rural areas.
• Art 27 States Parties recognize the right of
  persons with disabilities to work, on an equal
  basis with others this includes the right to the
  opportunity to gain a living by work freely
  chosen or accepted in a labour market and work
  environment that is open, inclusive and
  accessible to persons with disabilities

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ICF in Health and Disability Statistics

• Impairment approach
• Prototypical groups
• Not indicator of need
• Underreporting
• Categorical

• AP / EF approach
• Universal model
• Indicator of need
• Real life experience reported
• Continuum
• Allows multiple threshold levels
• Multiple dimensions
• person - environment
• capacity performance

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ICF in Linking Health Disability Surveys
Health Surveys Disability Surveys
Health condition Cause of disability
Level of functioning Type of disability Severity of disability
Interventions Assistance required Facilitators / barriers
Risk factors Modulating factors
Prognosis Impact of disability
Satisfaction Satisfaction
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Issues in health, education, social and labour
policies for the persons with disabilities

• Provide a description of the functional profile
  across all ages
• neutral
• inclusive
• Not disease-selective but disease-sensitive
• Define the habilitation/re-habilitation project
  and structure the program
• Multiprofessional
• Comprehensive
• Personalized
• Set the framework for outcome measurement
• Provide a reference for defining needs and plan
  resource allocation
• Guarantee the continuity of care across
  development milestones and settings and across
  Services and Agencies

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Areas of ICF use

• Public Health
• Epidemiology
• Health statistics
• Policy planning
• Clinic
• Phenotype description
• Habilitation/rehabilitation planning
• Effectiveness assessment
• Outcome definition
• Education
• Identification of problems in school setting
• Functional profile
• Planning for special need education
• Rights implementation
• Allocation of benefits
• Labour policies
• empowerment

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Applications

• (2005) ICF-CY as descriptor of functioning of
  children with complex or rare disabilites
• (2005/2006) ICF as a tool in Clinical
  rehabilitation setting
• (2006/2007) ICF as outcome descriptor
• (2006/2007) ICF as a Roadmap for the
  Rehabilitation project
• (2004/2007) ICF as a tool to functionally
  profile
• Chidren with special education needs
• Persons with disability looking for job
• (2007/--) ICF as descriptor of disability at the
  Regional Level

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Clinical Applications

• 1) Phenotype descriptor and linkage with
  established validated assessment tools
• 2) Test compatibility of ICF use within the
  clinical setting of rehabilitation
• 3) ICF as a tool for priority setting in
  rehabilitation
• 4) Use ICF as descriptor of outcome
• 5) ICF as framework for rehabilitation project
  and program

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Setting

• IRCCS Medea-La Nostra Famiglia
• Region of Veneto, North-East Italy
• Tertiary care Rehabilitation Hospital
• 40 bed Unit for severe childhood disability
• 40 bed Unit for Acquired Brain Injuries in adults
• 1000 patients/year
• Primary care Rehabilitation Center
• 250 children/day
• 2500 outpatients/year
• Multiprofessional team
• Physicians and Nurses
• Rehab technicians (Psychologists, PT, ST, OT,
  NPM)
• Educators and pedagogists
• Social workers

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Clinical use

• Obtain a complete, accurate and dynamic
  description of the person functioning which is
  understandable to all partners
• realize the effective and appropriate medical
  intervention proportionally to the needs
• organize the multiprofessional team to plan
  tailored rehabilitation interventions
• focus on interdisciplinary exchange of
  information in every day work, integrating
  different perspectives
• constantly offer counseling to the patient, the
  family, the professionals
• Verify the results and re-adapt the
  rehabilitation and educational program according
  to the functional status and the developmental
  stage
• Plan in advance according to the needs of full
  participation in a long term perspective

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ICF useability and linkage to assessment
toolsMethods

• Coding by ICF checklist
• ratersphysician, psychologist, speech therapist,
  physiotherapist, social worker
• Sources of information direct observation,
  written records, health-related professionals and
  teachers.
• Assessment by WISC-R o WAIS-R, GMFM, FIM
• raters psychologist, physiotherapist other than
  ICF raters

• 40 patients25 males,15 females
• age 3-18 years (10.70?5.28)
• Main diagnosis
• 7 motor disability (C.P.)
• 20 cognitive disability
• 13 multiple disability (cognitive ? motor
• ? sensorial)

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CORRELATIONS AND RESULTS

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Pilot study on neurocognitive rehabilitation in
long-term survivors of childhood brain tumors
2 (2005) ICF-CY as descriptor of functioning of
children with complex and/or rare disabilites

• Department of Pediatrics, University of Padova
• Medea Scientific Institute, Conegliano Research
  Centre
• Fondazione Città della Speranza

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Materials Methods

• multiprofessional evaluation at admission
• Translation into ICF-CY codes by experienced
  users
• Development of a profile counting open codes and
  weighting assigned qualifiers

Patients  
sex 8 F, 8M
Age at diagnosis M 6a4m (range 2a5m-15a)
Age at evaluation M 9a7m (range 4a11m-16a)
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Similar experiences for

• CP ages 0-18
• Severe TBI
• Spinal injuries
• Rett Syndrome
• Alternating Hemiplegia
• Children with intractable epilepsy
• Hereditary Spastic Paraplegia

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Conclusions

• ICF effectively describes the functional profile
  in children, adolescents and adults
• Can provide a unifying vision of disability
  across diagnostic classes
• Can provide the basis for identification needs
  and targeted intervention

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3 (2005/2006)ICF as a tool in Clinical
rehabilitation setting,

• ICF can be introduced in the process of
  in-hospital evaluation and treatment of persons
  with disabilites?
• ICF use in such setting
• Who,
• when
• how
• Which are the needed steps to allow appropriate
  ICF use

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Methods

• Training session for participants
• 13 days formal and practical training
• Identification of target population
• Children admitted for in-hospital rehabilitation
• Children followed for long term rehab programs
• Timing of coding
• After initial evaluation at admission
• At dimission
• At relevant transitions (pre-school/primary
  school, Center based program/community based
  program)
• Protocol of application
• Multiprofessional coding
• Physician s1-8, b2, b4-6, b8
• Psychologist b1, d1
• PT, ST, OT b3, b7, d2-8
• Pedagogist d1, d8
• SW d9, e1-5

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ICF Checklist or ICF-CY Questionnaire
Treatment Project
Verification
Discharge
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Feedback after 6 months pilot trial

• Provides a common language for all equipe members
• Useful synthetic and comprehensive descriptor of
  patient needs
• Well applicable in all medical conditions

• Time consuming
• Not clearly linked to commonly used assessment
  tools
• Not integrated in the program setting
• Not integrated in a systemic use within the
  service network

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4 (2006) From the ICF profile to the
Rehabilitation Project

• A.V. C7 ASIA-A at 10 m identified priorities
• Exploit the cognitive potential (b1, d1)gt Edu
• Improve communication/interaction (d3)gt SpTh
• Prevent urinary infection (b6)gtAb periodic lab
• Optimize wheelchair autonomy (d4)gt PT, OT
• Prevent limb/trunk deformities (b7, s7)gtPT

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The context as determinant modulator and as
target of intervention

• Products Technology
• Drugs
• Catheter
• Orthesis
• Support Relation
• Immediate extended Family
• Professionals
• Attitudes
• Immediate extended Family
• Professionals
• Services, Systems Policies
• Health educational services

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5(2007) ICF to track changes in functioning
16 survivors of primary brain neoplasms treated
in a rehabilitation setting 1 year follow up

• BF
• Deterioration of attention and memory
• Improvement of emotional functions

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Improvement of performance in all
domains Improvement of capacity in some
domains Widened performance/capacity gap
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Reduction or removal of barriers Optimization of
facilitators
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Procedure
Request
Definition of medical functional diagnosis MD
Definition of areas to be assessed
Definition of the Rehabilitation Project MD
Rehabilitation Program Equipe
Multiprofessional Assessments RP
Verification of goals
Program Update
Discharge
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Ministero del Lavoro e delle Politiche Sociali
OMS Organizzazione Mondiale della Sanità
Progetto ICF in Italia Welfare Policy
Development

• Strategia di sviluppo, formazione ed utilizzo
  della
• Classificazione Internazionale del
  Funzionamento, della Disabilità e della Salute
• dellOrganizzazione Mondiale della Sanità

ICF e Politiche del lavoro Progetto Pilota
2003-2005
Il
ITALIAlavoro
DIN - Disability Italian Network
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Cultural and legislative evolution

Legge 382/68 COLLOCAMENTO OBBLIGATORIO
(mandatory employment)
Legge 68/99 COLLOCAMENTO MIRATO (Targeted
employment)
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La legge 68/99 e il collocamento mirato
Basic Principles

Introduction of the concept of targeted employment
Balanced ripartition for the productive system
of the law requirements
APPLICATION OF THE TOOLS PROVIDED BY THE
CONVENTION
BENEFIT ASSIGNEMENTS PROPORTIONALLY TO THE
DISABILITY SEVERITY OF THE WORKER
DEFINITION OF AD HOC NATINAL AND REGIONAL
BUDGETS FOR THE LAUNCH OF PROGRAMS AIMED AT THE
TARGETED EMPLOYMENT
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The definition of targeted employment
Disability is not the only factor taken in account
For targeted employment of persons with
disability it is meant, according to the point 2
of the L. 68/99 the complex of technical tools
and support that will allow an appropriate
evaluation of the persons with disability in
their job capacity and their placement in an
adequate job setting, through the analysis of the
type of jobs, the forms of support, the positive
actions and problem solving connected to the
environment, the instruments, the interpersonal
relations in the everyday work and relation
milieu.

INTERPERSONAL RELATIONS
WORKER
ENVIRONMENT
INSTRUMENTS
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The personalized projects
The right job for the right person

The new concept introduced by the law 68/99
requires the structuration and use of a set of
tools to achieve the encounter between individual
competences of the person with disability and the
characteristics of the work place, in order to
define the personalized project. That means the
contribution of a multiplicity of techincal
subjects (offices for the employment, medical
cmmissions, each with is own competence.    
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PERSONALIZED projects

• Need for
• effective tools (to better describe the person
  with disability and the work place)
• A functional network of all the involved actors

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The network on the offer side
ORIENTEREEING

INFORMATION FIRTS ENCOUNTER
SPI
PERSON with DISABILITY
ORDERED LIST
ENROLLMENT
D/O MATCH EMPLOYMENT
ANAGRAFICAL AND PROFESSIONAL PROFILE
Medical Commission ASL
MEDICAL EVALUATION
INDIVIDUAL WORKER FORM (art.8 comma 1 Legge
68/99)
TECHNICAL COMMETTEE
EVALUTAZIONE OF THE RESIDUAL CAPACITY PROPOSALS,
ADAPTATION PROJECTS
MEDICAL REPORT
INFORMATIC SYSTEM
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THE NETWORK domand side
TERRITORIAL BALANCING
SPI

TEMPORARY WAIVER
PARTIAL WAIVER
LIST OF THE OPENINGS
INFORMATIVE FORM
EMPLOYER
EMPLOYER
PRESELECTION
JOB APPLICATION
CHOICE OF THE CANDIDATES
PUNTO IMPRESE WITH dedicated i information
point BENEFITS WORK PLACE ANALYS BARRIERS, ECC.
ON-SITE VISIT
WORKPLACE ANALYSIS CHCKLIST (ICF)
D/O MATCH START OF THE EMPLOYMENT
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Progetto ICF E POLITICHE DEL LAVORO
Specific Objectves

• Establish a National Team of trainers
• Train the widest possible number of people
  dealing with Lobour related policies
• Field trials at selected sites
• Diffuse nationally and Internationally the
  results of the project
• Establish a virtual forum for exchange of
  experiences and knowledge on ICF and its
  application

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Progetto ICF E POLITICHE DEL LAVORO
Project Partners
Ministry of Welfare
ITALIA LAVORO
DIN Disability Italian Network
Ministry of Health
Ministry of Education
Italian Institute of Social Medicine
Regional Coordination office
FAND
UPI
FISH
ANCI
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Progetto ICF E POLITICHE DEL LAVORO

• Training courses (basic and advanced) completed
  in 325 sites in 5 regions (1000 trainees)
• Experimental application in the 3 pilot sites
  within the process of guided and supported
  employment for people with disability (L68/99)
• Definition of an ICF-based checklist describing
  abilities and disabilities relevant for a
  targeted job placement

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Progetto ICF E POLITICHE DEL LAVORO -
EXPERIMENTAL APPLICATION -
WORKER DOSSIER
DEDICATED CHECK-LIST (DPCM 13.1.2000)
EMPLOYER FORM (Notice of openings)

FUNCTIONAL AND PROFESSIONAL PROFILE
Anagraphical/Professional form (ex art 8 Lg 68/99)
Work place analysis form (profile-mansion)
JOB START
CHECK LIST ON SITE OBSERVATION Profile correction
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DPCM 13.1.2000
Movement of the extremities/limbs function

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Progetto ICF E POLITICHE DEL LAVORO -
SPERIMENTAZIONE -
DPCM / ICF Conversion

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DPCM / ICF Conversion

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Modificed Checklist
Breve lista di dimensioni AP Qualificatore di performance Qualificatore di capacità
d2. COMPITI E RICHIESTE GENERALI
d210 Intraprendere un compito singolo
d2102 Intraprendere un compito singolo autonomamente
d2103 Intraprendere un compito singolo in gruppo
d2108 Intraprendere compiti singoli, altro specificato
d220 Intraprendere compiti articolati
d2202 Intraprendere compiti articolati autonomamente
d2203 Intraprendere compiti articolati in gruppo
d2208 Intraprendere compiti articolati, altro specificato
d240 Gestire la tensione e altre richieste di tipo psicologico

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The check-list has been tested on representative
cases Physical (92) Sensorial (22) Psychiatric
(34) Mental (28)
TOTAL TESTED CHECK LISTS 202 OF WHICH 26 on the
same persons by the medical commission and the
employment services
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Progetto ICF E POLITICHE DEL LAVORO -
SPERIMENTAZIONE -

problems

• INTRA-EQUIPE INTEGRATION
• ORGANIZATION OF THE EQUIPE WORK
• ENROLLMENT OF WILLING PARTICIPANTS AMONG THE
  PERSONS WITH DISABILITIES
• OVERLAP WITH ROUTINE JOB
• THE CHECKLIST FILLING IS TIME CONSUMING
• LACK OF THE MEDICAL COMPONENT IN THE EQUIPES

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Progetto ICF E POLITICHE DEL LAVORO -
SPERIMENTAZIONE -

POSITIVE POINTS
1. INVOLVEMENT OF ALL THE ACTORS
2. RESPECT OF TIMING 3.
CONSOLIDATION OF THE EQUIPE COHESION 4.
BETTER INTEGRATION AMONG INVOLVED SERVICES
5. DEFINITION AND STRENGHTENING OF
THE NETWORK 6. UNIFYING CONCEPTUAL
MODEL 7. UNIFYING TOOL
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Progetto ICF E POLITICHE DEL LAVORO

PROJECT PRODUCTS
FORMATION TRAINING COURSE TRAINING PLAN TRAINING
MATERIAL TUTOR GUIDE ON-LINE TRAINING

EXSPERIMENTAL CHECK LIST ICF E POLITICHE DEL
LAVORO FORM DPCM 13.01.2000 SCHEDA INDIVIDUALE
DEL LAVORATORE SCHEDA ANALISI POSTO DI
LAVORO/MANSIONE PROFILO PROFESSIONALE
INTEGRATO SCHEDA OSSERVAZIONE IN
SITUAZIONE APPLICATION PROTOCOL
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Prospective potential use of ICF
bio-psycho-social model
Favours targeted employment

dynamic concept of functioning and disability
Multiprofessional, multisectorial
Favours network integration
Favours information use and exchange
Universal Linguage
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Progetto ICF E POLITICHE DEL LAVORO

PRODUCT DIFFUSION
WEB SITE www.italialavoro.it/icf

CASE VIGNETTES
PUBLICATIONS
PROTOCOLS
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ICF-CY and education for children with special
needs

• Background
• inclusion in education for children with special
  needs is regulated by national legislation and
  applied through local agreements defining
  protocols
• Objective
• Within the revision of the agreement regulating
  the way in which
• children with disabilities are identified,
• Functional diagnosis is defined
• The personalized educational plan is built
• Partners
• Health Services at the provincial level (Treviso)
• School administration
• Municipalities
• Medea Scientific Institute (scientific advisor)

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Steering Committee ULSS, CSA, IRCCS
Training 3 professionals3 teachers for each
school order from 1 CTI per ULSS 42 individuals
Medical Workgroup (ULSS IRCCS) Development of
the proposed new format of Functional Diagnosis
Work Group (school workers monitor)
Elaboration of the chcklist prototype
Harmonization of tools
Families Association Workgroup Integration of
the family driven elements
Pilot Testing in selected sites
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School driven screening
Identification of difficulties Coded with ICF
Medical evaluation
SCHOOL
Functional Diagnosis ICF based
discharge
Individualized education plan
Health Service
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Conclusions

• ICF and ICF-CY can describe children and adult
  functioning in various health conditions,
  providing useful insight into the functional
  consequences of diseases
• ICF provides a common language shared by all
  health professionals and understood by
  professionals in other services (school, labour,
  social services) allowing more efficient
  networking
• ICF can be incorporated in the clinical process
  of in-hospital acute and post-acute intensive
  rehabilitation functioning as an effective
  roadmap for intervention
• ICF can efficiently track changes and helps
  identifying determinants of outcome
• ICF may thus guide service organization and
  complement ICD data for epidemiologic and
  statistical purposes

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Conference on Children Health, Disability and
ICF-CY held in Venice, Italy on 25-26 October
2007.
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THE ITALIAN WHO-FIC COLLABORATIVE CENTER FVG-ARS R
esearch Branches IRCCS Medea, IRCCS Besta, ISTAT

                                                                              
The 2007 Annual meeting of the WHO Network of
Collaborating Centres for the Family of
International Classifications (WHOFIC2007) was
held in Trieste, Italy, 28 Oct-4 Nov. The meeting
was co-organized by the WHO Collaborating Centre
for the Family of International Classifications
in Italy and the WHO Measurements and Health
Information Systems (MHI) Department.
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ICF AN EVOLVING TOOL FOR EVOLUTION