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Comunità in Rete: processi di inclusione tra scuola ed extrascuola



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Comunità in Rete: processi di inclusione tra scuola ed extrascuola Casalgrande 21 novembre 2011 Il Concetto di Transizione nell approccio alle persone con Disabilità Intellettiva Ciro Ruggerini Sumire
Comunità in Rete: processi di inclusione tra scuola ed extrascuola Casalgrande 21 novembre 2011 Il Concetto di Transizione nell approccio alle persone con Disabilità Intellettiva Ciro Ruggerini Sumire Manzotti INDICE Nascita recente del concetto di Transizione riferito alle persone con Disabilità Intellettiva Implicazioni del concetto di Transizione INDICE Nascita recente del concetto di Transizione riferito alle persone con Disabilità Intellettiva Implicazioni del concetto di Transizione Il concetto di transizione nell arco della vita relativo alle persone con Disabilità Intellettiva 7 Congresso Nazionale SIRM Bari, aprile 2011 Consiglio Direttivo SIRM C. Ruggerini, C. Porcelli, M.Bertelli, CM Cornaggia, G Albertini, E Aguglia, A Castellani, P Frilli, G Giambalvo del Ben, GP La Malfa, S Lassi, R Salvini Transizione Transitions occur throughout life and are faced by all young people as they progress, from childhood through puberty and adolescence to adulthood; from immaturity to maturity and from dependence to indipendence. In addition, some young people experience extra transitions as a result of other life events for example, bereavement, separation of parents, and being placed in care. Diana Andrea Barron et al. ( 2006) Transitions and Life Focal Points for People with Intellectual Disabilities Life focal points Living with family Help for families Schooling Medical care Recreation Childhood Living with family Help for family carers Vocational training and work Health care Community skill development Young adult School leaver Possible living on own Independent of family Living on own or with group Retirement Health care Community involvement Middle age Living on own Changes in health Lifestyle changes Family/carer aging Old age Pensioning Physical & mental decline Loss of carers Transitions Transizione: l origine di un concetto The increased longevity of persons with intellectual disabilities in many of the world s nations is the direct result of medical and social advances which have also extended the longevity of the general population. Yet, the WHO is aware that people with intellectual disabilities are still generally regarded as a devalued class and often disadvantaged when attempting to access or secure social and health services. With this in mind, and recognizing that scientific and medical advances can benefit people with lifelong disabilities World Health Organization (2000). Ageing and Intellectual Disabilities - Improving Longevity and Promoting Healthy Ageing: Summative Report. Geneva, Switzerland: World Health Organization Transizione Orizzonte Internazionale Orizzonte Europeo Altri Orizzonti Orizzonte Italiano Orizzonte Internazionale The WHO ReportsR Healthy Ageing Adults with Intellectual Disabilities Ageing and Intellectual Disabilities Improving Longevity and Promoting Healthy Ageing Journal of Applied Research in Intellectual Disabilities (JARID), 2001, Vol. 14(3), Ageing & Intellectual Disability Improving Longevity and Promoting Healthy Ageing Summative report (WHO, 2000) The WHO Reports (2000) International Association for the Scientific Study of Intellectual Disabilities (IASSID AGING SIRG) Matthew P Janicki - Inclusion International (II) Nancy Breitenbach - Department of Mental Health and Substance Dependence (WHO) The WHO Reports (2000) Key issues: There is generally a lack of organized public or private sector system designed to address the needs of persons with ID Pubblic attitudes need to be modified There is a need for supportive services, health surveillance and provision, and family assistance for people with ID Women with ID often find themselves a disadvantaged class In some nations people with ID are still not distinguished clearly from mental illnesses Health practitioners generally fail to recognize special problems The WHO Reports (2000) Recommendations Over their life-span, adults with intellectual disabilities should maintain the same array of preventive health habits and receive the same protective health services as those offered to the general population To achieve this goal: The WHO Reports (2000) Recommendations Health care providers should adopt a life span approach Adults with DI and their carers need to receive appropriate and ongoing education regarding healthy living practices Ensure that there are sufficiently educated and trained medical and health personnel The distinctive health care needs of women with ID should be recognized Orizzonte Europeo Carenza di strategie Non vi è alcuna strategia coerente e basata sulle evidenze per il monitoraggio della salute delle persone con disabilità intellettiva negli Stati Europei. Per questo non è possibile fare confronti tra questa popolazione e la popolazione generale nè confrontare la situazione in diversi Paesi. Senza una tale strategia, verranno meno eventuali tentativi di implementare le politiche europee e quindi di promuovere invecchiamento sano dei cittadini europei con disabilità intellettive p. 48 Walsh, P.N., Kerr, M., Van Schrojenstein Lantman-de Valk, H., (2003). Health indicators for people with intellectual disabilities. A European perspective. European Journal of Public Health, Vol 13, No 3, Supp 1, 47-50 Monitoraggio dello Stato di Salute degli Adulti con Disabilità Intellettiva in Europa Coordinato da Patricia Noonan Walsh Centro per gli Studi sulla disabilità, University College Dublin Ireland Pomona Pomona Orizzonte Europeo: Progetto POMONA POMONA I ( ) aimed to identify a set of health indicators specific to people with intellectual disability resident in the European Union. The monitoring of these indicators on a longitudinal basis will provide a benchmark of health of people with intellectual disability over time thereby highlighting any reduction in the disparity of health status and access to health systems experienced by those with intellectual disability. Using a previously defined set of health indictors for the general population as a working framework, (the European Community Health Indicators: ECHI), POMONA project partners engaged in a consultation process in each participating Member State. People with intellectual disability, family & carers, advocates, health professionals, service providers, researchers, and policy makers all contributed to the identification of a draft set of eighteen health indicators for people with intellectual disability. An extensive review of evidence-based research was undertaken to validate this selection and potential operational and measurement definitions of these indicators were presented. THE POMONA 18 INDICATOR SET Orizzonte Europeo: Progetto POMONA Demographics 1.1 Prevalence 1.2 Living arrangements 1.3 Daily Occupation 1.4 Income/Socio-Econimic Status 1.5 Life Expectancy Health Status 2.1 Epilepsy 2.2 Oral health 2.3 Body Mass Index 2.4 Mental Health 2.5 Sensory 2.6 Mobility Determinats 3.1 Physical Activity 3.2 Challenging Behaviour 3.3 Medication Health System 4.1 Hospitalisation/Health Care 4.2 Health Check Ups 4.3 Health Promotion 4.4 Training Health Professionals Orizzonte Europeo: Progetto POMONA POMONA II, ( ): The over-arching aim was to promote the quality of life and health of people with intellectual disabilities in Europe by the provision of accurate health information and knowledge regarding this population Orizzonte Europeo: Progetto POMONA POMONA II, ( ): aim: pilot the collection of data on people with intellectual disability in thirteen Member States; interview with 1300 men and women with ID; POMONA II ( ) 2008) IRLANDA Prof. Patricia Noonan Walsh & Christine Linehan Austria Prof. Germain Weber & Dr Cecilia Heiss Belgio Prof. Geert van Hove Finlandia Dr. Tuomo Määttä Francia Dr. Bernard Azema Germania Prof. Meindert Haveman Italia Prof. Serafino Buono Lituania Dr. Arunas Germanavicius Paesi Bassi Dr. Henny van Schrojenstein Lantman-de Valk Norvegia Dr. Jan Tøssebro Romania Dr. Alexandra Carmen Câra Slovenia Dr. Daša Moravec Berger Spagna Prof. Luis Salvador Galles, Regno Unito Prof. Mike Kerr Orizzonte Europeo: Progetto POMONA SUMMARY Demographics 77% lived in the community 1.1 Prevalence 1.2 Living arrangements 1.3 Daily Occupation 1.4 Income/Socio-Econimic Status 1.5 Life Expectancy over one-half said they had a job of these, half earned money Orizzonte Europeo: Progetto POMONA SUMMARY Health Status 2.1 Epilepsy 2.2 Oral health 2.3 Body Mass Index 2.4 Mental Health 2.5 Sensory 2.6 Mobility 28% of people reported epilepsy 21% reported having pain in their mouth Orizzonte Europeo: Progetto POMONA SUMMARY Determinats one-half of the people were either overweight or obese 3.1 Physical Activity 3.2 Challenging Behaviour 3.3 Medication two-third of the partecipants took at least one kind of medication ( most commonly used medication falls within the nervous system category) Orizzonte Europeo: Progetto POMONA SUMMARY Health System 4.1 Hospitalisation/Health Care 4.2 Health Check Ups 4.3 Health Promotion 4.4 Training Health Professionals 83% had visited a doctor in the past year 17% had stayed in a hospital during the past year Altri Orizzonti Altri paesi: atti, piani, ricerca Paese Anno Documento Concetti Chiave Sweden AUSTRALIA (Milbourne) Japan 2006 Singapore UK CANADA (halifax, Nova Scotia) 1998 Special-rights law 2005 Canvassing the Issues the Services and Supports for Persons with Disabilities Act 2006 enabling Masterplan Implementation of Valuing People What about us? Aging with Disability and Dignity the social role as a citizen; increased impowerment and influence over on's services; the same opportunities as other citizens Universal platform; User frindeliness; Institution to community; Transparency and Clarification; Stabile fiscal resourses Heartware; City of possibilities; the opportunity to become equal, integral and contributing members of society Mainstream public services as a key indicator of inclucion in Universal citizenship; New Public Management- critique of large public sector agencies, commitment to consumer choice between alternative providers, Market Management; enhancing choice for ID; partecipation to local partnership boards access to needed services; person centred supports; full-citizenhship and inclusion; continued participation and living; age-friendly communities; inform key decision makers; best-practice standards Belgio 2008 Olanda 2009 USA 2010 Ireland 2010 UK 2011 UK (Wales) 2011 Accomodation and a person-centerd philosophy; Aging in Place; Changing Capabilities and Supports for the Aging of nedds of aging people; Accessibility, Safety, Comfort, Indipendence, Social People with ID Interactions Care and Service transition fromchildren's service to adult services; continuity, accessibility, trajectories: Defining Its availability, and flexibility of care and services; asking which criteria people Course and with ID and their families value most when judging the quality of Determinants Fromthe Client's Perspective trajecttories Health Surveillance Systemfor People with ID in the US Transition fromspecial education into Postschool Services for Young Adolts with ID: Parents' Experience Transition for Teenagers With Intellectual Disability: Carers' Perspective Multi-agency Protocols in ID Transition Partnerships quality healthcare; multistage strategy; healthcare reform vocational training and emplyment; the role of the parent; gaps between policy and service provision the need for quality information and validated and standardized tools for transition planning; integrated referral systems for health and social care need; clear care pathways; monitoring of individual and systemic outcomes transition protocols; person-centered planning; involvement of young people and carers; inclusion of external agencies in transition planning Intellectual Disability and Ageing: Canvassing the Issues. Leveratt et al. (2005)- Australian Catholic University - Contents * Theoretical approaches to ageing and ID the whole focus of Normalisation approach is on changing disabled people to make them more like normal people rather than challenging the idea of normality * The interviews - Individuals and their families - Disability service porviders le persone con DI devono diventare simili alle persone normali oppure bisogna cambiare il concetto di normalità? - Aged care service provider - Policy workers Possibilities for an Inclusive Society in Singapore: Becoming Inclusive Within. Lim (2009)- National Institute of Education - the needs for the possibilities of changes in society toward inclusivity of diverse others (e.g. persons with intellectual disabilities) therefore lie within the individual and imply that at the core of such change is personal interior growth and tranformation al centro di questo cambiamento c è una crescita personale interiore e una trasformazione non si può dare ciò che non si ha in assenza di una profonda conoscenza di sé, di libertà interiore, di integrità e della capacità di amare, c è uno spazio ridotto per includere, condividere, donare this thinking honors and reflects the adage that one cannot give away what one does not possess within. Without the deepening of selfunderstanding, freedom, integrity, and the capacity to love, there is little within, as a basis, to include, share with, or give to others Orizzonte Italiano Istituto Sacra Famiglia, La persona adulta con ritardo mentale nelle istituzioni: cura e riabilitazione. Giornate di studio, 30 Nov - 1 Dic 1995, Milano La persona adulta con ritardo mentale nelle istituzioni: cura e riabilitazione. Milano, 1995 Giorgio Moretti, Divenire biopsichico del Ritardato Mentale se è vera la stima secondo la quale il Ritardo Mentale incide nella popolazione generale in misura dell 1.5% (stima che è, a mio avviso, piuttosto bassa), i soggetti ritardati in Italia si avvicinerebbero al milione, 600/ dei quali sarebbero in età adulta. Di tale rilevante popolazione ben poco sappiamo può essere sconcertante, in un epoca dominata dalla ricerca di precisione, scoprire che molte decine di migliaia di individui gravitano sul mondo medico ed assistenziale in modo assolutamente irrazionale, ricevendo perciò un assistenza non guidata se non da una conoscenza approssimativa ciò di cui si avverte il bisogno è un ampia survey capace di fornire delle direttive generali che possono declinarsi secondo tre assi principali: la situazione sociale, l età, il grado di compromissione Giorgio Moretti e don Giancarlo Pravettoni dell Opera Don Guanella - promossero nel 1995 questa survey - una ricerca che interessò 483 persone con DI in età adulta di una età media di 36 anni -, che frequentavano 22 Residenze o Centri Diurni della Lombardia e del Lazio (Ruggerini e coll. 2004). il Percorso della Survey proposta da Giorgio Moretti 1995: ideazione e proposta al Superiore e Consiglio generali della Congregazione dei Servi della Carità Opera Don Guanella 1996: affidamento del coordinamento a Don Giancarlo Pravettoni 1997: messa a punto del metodo della ricerca (Questionario) e individuazione delle organizzazioni assistenziali disponibili per la collaborazione alla ricerca 1999: prima elaborazione statistica dei dati relativi a 483 Ritardati Mentali adulti 2004: presentazione definitiva della La sfida tra sviluppo e Ritardo Mentale (Franco Angeli Editore). orizzonte italiano: Costituzione AIRIM nel 1996 L Associazione Italiana per il Ritardo Mentale (AIRIM), costituitasi nel 1996, con lo scopo di promuovere il coordinamento di Operatori e Centri che si occupano di Ritardo Mentale, in particolare in età adulta, rispondendo ad un esigenza, avvertita nel settore, di collegamento e di promozione e qualificazione delle attività. orizzonte italiano: Costituzione della SIRM nel 1996 Societa Italiana per lo studio del Ritardo Mentale (SIRM), Sezione Speciale della Societa Italiana di Psichiatria (SIP) La Nuova Longevita della Disabilita Intellettiva Percorsi di cura dalla gestione alla relazione (Liguori Editore, 2008) Tema: assistenza alle persone adulte con sindrome di Down che vanno incontro a Demenza Una riflessione più generale relativa ai ruoli sociali e alla qualità di vita nel percorso di nuova longevità di questa popolazione. L'analisi della relazione tra caregiver e persona accudita La capacità relazionale e la flessibilità del caregiver Descrizione di una esperienza iniziata nel 2005 presso il centro integrato La Meridiana ( ANFFAS, Trento), il primo, in Italia dedicato alla assistenza alle persone con Sindrome di Down e Demenza La Promozione della Salute Mentale nella Disabilita Intellettiva Consenso multidisciplinare e intersocietario (Erickson, 2010) 20 capitoli; prospettiva life-span e multidisciplinare; Prospettive 1. Obiettivi 2. Prassi di assistenza 3. Ricerca a. obiettivi Prospettive Report on the State of Science on Health Risks and Aging in People with Intellectual Disabilities. (IASSID Special Interest Research Group on Aging on ID) Meindert Haveman et al (2009) Create a healthy environment Identify health risk early, including ageing itself Manage illness appropriately Prepare for appropriate palliative care and end-of-life decision making Call for effective training of health care practitioners Prospettive b. tipi di prassi operative Aging With Developmental Disabilities. An Overview. Toby Long & Sarkis Kavarian (2008) Person-based Provider-based Supporting the individual in such areas as nutrition, physical activity, preventive care, rest, management of stress Systematic inclusion of information on developmental disabilities within currucula for service providers (FORMAZIONE DELLA COMUNITA, ONU, 2006) Policy -based Creating a system of care to improve coordination among agencies c. ricerca Prospettive The transition to adulthood for youth with disabilities: Evidence from the literature. Debra Stewart et. al (2010) Inclusion Criteria Published in past 8 years ( ) (N = 134) Evidence based references Population of interest is young people, ages 14 to 29 years of age with disabilities The transition to adulthood for youth with disabilities: Evidence from the literature. Debra Stewart et. al (2010) Themes 1. Current Experiences and Outcomes (Youth, Parent, Service providers) 2. Different Types of Transition ( to and from services or systems; developmental or lifecourse transition) 3. Domains of Transition (Employment domain, Education domain, Living domain, Social and community life domain) 4. Factors that Influence Transition Barriers and/or Supports (Youth factors Risk factors/barriers; Supports and Facilitators -; Environmental Factors: Barriers and Supports) 5. Complexity The transition to adulthood for youth with disabilities: Evidence from the literature. Debra Stewart et. al (2010) A. Transition to adulthood is now viewed as a complex phenomenon and this is leading reserchers to study interactions of person and environment, as well as dynamic processes, opportunities and other complexities B. It may be useful and cost effective to connect tipical transition frameworks and disability frameworks for future study, to learn more about similarities and differences and promote an inclusive approach to research C. Researchers, organizations and services will need to put aside the view that our group is different/special and work together Housing Daily Living Health Social Involvements Issues related to If living in family home Supports for carers Modifications to home if physical needs change If in non-family settings Financial supports Aging in place supports Home sharing finding housemates Housing Issues related to Daily Living Aid with finding employment Enrolment in community third age activities Learning community living skills Self-advocacy for meeting needs Help with shopping and other daily activities Civic involvements Health Issues related to Stable affiliation with physician, clinic, or other health care center Periodic health screening for aging related conditions or diseases Dental care (oral health) Mental health care Specialty care for physical disability Social
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