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ICF: turning concepts into practice The Italian experience

ICF: turning concepts into practice The 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. Disability is a major public health issue.

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ICF: turning concepts into practice The Italian experience

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  1. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  2. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  3. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  4. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  5. Impairment approach Prototypical groups Not indicator of need Underreporting Categorical A&P / EF approach Universal model Indicator of need Real life experience reported Continuum Allows multiple threshold levels Multiple dimensions person - environment capacity – performance ICF in Health and Disability Statistics I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  6. ICF in Linking Health & Disability Surveys I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  7. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  8. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  9. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  10. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  11. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  12. I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  13. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  14. 40patients:25 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) Coding by ICF checklist: raters:physician, 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 ICF useability and linkage to assessment toolsMethods: I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  15. CORRELATIONS AND RESULTS I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  16. 2 (2005): ICF-CY as descriptor of functioning of children with complex and/or rare disabilites Pilot study on neurocognitive rehabilitation in long-term survivors of childhood brain tumors Department of Pediatrics, University of Padova Medea Scientific Institute, Conegliano Research Centre Fondazione Città della Speranza I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  17. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  18. I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  19. Similar experiences for: • CP ages 0-18 • Severe TBI • Spinal injuries • Rett Syndrome • Alternating Hemiplegia • Children with intractable epilepsy • Hereditary Spastic Paraplegia I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  20. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  21. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  22. Methods • Training session for participants • 1+3 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  23. ICF Checklist or ICF-CY Questionnaire Treatment Project Verification Discharge I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  24. 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 Feedback after 6 months pilot trial I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  25. 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)> Edu • Improve communication/interaction (d3)> SpTh • Prevent urinary infection (b6)>Ab + periodic lab • Optimize wheelchair autonomy (d4)> PT, OT • Prevent limb/trunk deformities (b7, s7)>PT I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  26. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  27. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  28. Improvement of performance in all domains Improvement of capacity in some domains Widened performance/capacity gap I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  29. Reduction or removal of barriers Optimization of facilitators I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  30. Request Procedure 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  31. 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 dell’Organizzazione Mondiale della Sanità ICF e Politiche del lavoro Progetto Pilota 2003-2005 Il ITALIAlavoro DIN - Disability Italian Network

  32. Cultural and legislative evolution Legge 382/68 COLLOCAMENTO OBBLIGATORIO (mandatory employment) Legge 68/99 COLLOCAMENTO MIRATO (Targeted employment) I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  33. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  34. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  35. 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. I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  36. “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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  37. The network – on the “offer” side ORIENTEREEING INFORMATION FIRTS ENCOUNTER SPI ORDERED LIST PERSON with DISABILITY ENROLLMENT D/O MATCH EMPLOYMENT Medical Commission ASL ANAGRAFICAL AND PROFESSIONAL PROFILE 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  38. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  39. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  40. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  41. Progetto ICF E POLITICHE DEL LAVORO • Training courses (basic and advanced) completed in 3+25 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  42. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  43. Muovere e usare gambe e braccia  assente  media  potenziale  minima  elevata Afferrare/spostare oggetti pesanti con le mani  assente  media  potenziale  minima  elevata Servirsi delle mani per svariate operazioni che richiedano precisione  assente  media  potenziale  minima  elevata Muovere o tenere fermi i piedi coscientemente (ad esempio: la capacità di usare una pedaliera)  assente  media  potenziale  minima  elevata DPCM 13.1.2000 Movement of the extremities/limbs function I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  44. Moviment of the extremities/limbs function Muovere e usare gambe e braccia b710 Funzioni della mobilità dell’articolazione b720 Funzioni della mobilità dell’osso b730 Funzioni della forza muscolare b735 Funzioni del tono muscolare  assente  media  potenziale  minima  elevata Afferrare/spostare oggetti pesanti con le mani d440 Uso fine della mano d4400 Raccogliere d4401 Afferrare d4402 Manipolare d4403 Lasciare d4301 Portare con le mani d4305 Posare degli oggetti  assente  media  potenziale  minima  elevata Progetto ICF E POLITICHE DEL LAVORO - SPERIMENTAZIONE - DPCM / ICF Conversion I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  45. Moviment of the extremities/limbs function Servirsi delle mani per svariate operazioni che richiedano precisione d440 Uso fine della mano d445 Uso della mano e del braccio  assente  media  potenziale  minima  elevata Muovere o tenere fermi i piedi coscientemente (ad esempio: la capacità di usare una pedaliera) d4350 Spingere con gli arti inferiori  assente  media  potenziale  minima  elevata DPCM / ICF Conversion I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  46. Modificed Checklist I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  47. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  48. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  49. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

  50. 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 I.R.C.C.S. "E. Medea" - Ass. La Nostra Famiglia Polo Veneto

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