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Patty van Belle-Kusse, MSc Budapest, Oktober 2012

QUALITY OF LIFE. Emancipation and self-determination of people with intellectual disabilities from an institution to an inclusive society. Practice of ARDUIN The Netherlands. Patty van Belle-Kusse, MSc Budapest, Oktober 2012. Content. 1. Care-system in the Netherlands

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Patty van Belle-Kusse, MSc Budapest, Oktober 2012

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  1. QUALITY OF LIFE Emancipation and self-determinationofpeoplewithintellectualdisabilitiesfrom an institution to an inclusive society Practice of ARDUIN The Netherlands Patty van Belle-Kusse, MSc Budapest, Oktober 2012

  2. Content • 1.Care-system in the Netherlands • 2. The process of Emancipation and self- determination: from an institution to an inclusive society • 3.Interaction with the audience • 4. Film Arduin • 5.Person-centered methodology • 6. Considerations • 7. Discussion/questions

  3. Demografic NL 2010 • 16,4 milj. People • Prevalence of people with ID; 0.7% = 114.800 people (according def. AAID) • Appr. 55.000 with supported living and appr 60.000 with family or on their own Ger- manie Belgium

  4. Definition AAIDD • 1. intellectual abilities • 2. adaptive behaviour • 3. participation,interactions, social roles • 4. health • 5. context This instead of classification of severity of ID as mild, moderate or profound solely on the basis of the IQ.

  5. Who delivers the care/support? • Parents and ‘Mantelzorgers’ • Professionals; doctors (AVG), psychologist/behaviorist, paramedici, caretakers/supportworkers (in living or daily-activity), some psychiatrists, dentist.

  6. Living • < 6 places ; increased • < 21 places; increased • However: amount of institutional care stayed the same! because of diminishing the waitingslists

  7. Differences • Scandinavia: Right (by law) on being a part of and living in the society: ‘pull’ people with ID in the society • The Netherlands: Community Care is preferred, but is the responsibility of particular initiative; ‘push’ people with ID in the society. This is not by law!

  8. Poldermodel

  9. Some barriers • Education (Schools) • Living (houses) • Work (paid jobs) • Leisure (activities) • Health care (doctors, hospitals)

  10. Routing Person with ID  Needs help/support (MEE)  Indication (CIZ); 8 different care-packages  Money (Zorgkantoor):  PGB  ‘In natura’ (serviceproviders)

  11. Emancipation and self-determination for people with intellectual disabilities: from an institution to an inclusive society CONTENT OF PRESENTATION * Backgrounds of change: - Human Rights - Quality for Life * The process that has been followed within Arduin: institution  inclusive society * The changes for clients and organization * Conditions necessary for change * Conclusions * Recommendations

  12. 17 years ago in ARDUIN (then Vijvervreugd)* the focus was on ‘care’ * insufficient care for 360 clientsResulting in insufficient quality of lifeAt the same time:* a change of view on the nature of mental disability: * Disability studies * American Association on Mental Retardation /AAIDD (definition ID ‘02,’09,)* criticism about institutional care* universal declaration of Human Rights* Quality of Life (Schalock) BACKGROUNDS OF CHANGE

  13. Quality of CARE vsQuality of LIFE

  14. Using the ‘Action Research’ method (J. van Loon / 2006) = formofactinginresponsetoaproblem situation - in collaboration with clients/family/employees - aimed at ‘theory’ development ‘Action Research’ uses - organizational case studies - life histories - questionairies - focus groups - study of developments CHANGE PROCESS Perception of clients / parents / staff De-institutionalisation Organization changes Methodologies

  15. Result of ‘Action Research’: The dimensions in Quality of Life that were seen in Arduin as most essential were: * Self-determination about - where to live - where to work - how much support is needed * Personal development * Inclusion CHANGE PROCESS (2)

  16. * Focus on ‘Quality of Life’ and * Introduce a support-paradigm (simultaneously) (‘Quality of Care’ on its own, is absolutely not a guarantee for ‘Quality of Life’) * Radical change of perspective and discourse (well managed), making use of: - person-centred planning, - supports paradigm - empowerment for both staff and clients * De-institutionalisation CONDITIONS NECESSARY FOR CHANGE

  17. 17 years agoNow 1 place to live Living in community (institute) in a normal home CHANGES FOR CLIENTS

  18. 17 years agoNow 1 place to live Living in community (institute) in a normal home Same place to work Working in 1 of the 60 work-/day-care facilities or elswhere CHANGES FOR CLIENTS

  19. Examples of shops / companies Restaurant ‘Di-vers’ Work and education for people with a mild ID Grand café ‘Het Getij’ Elderly people in the neigbourhood meet and eat in this place. There is a 3-course meal for very little money In collaboration with the local government and all kinds of relevant organizations

  20. WORKING IN A GIFTSHOP

  21. 17 years agoNow 1 place to live . (institute) . Same place to work . . . No education Education at the Arduin Academy for Quality of Life CHANGES FOR CLIENTS

  22. 17 years agoNow 1 place to live Living in community (institute) in a normal home or elsewhere Same place to work Working in 1 of the 60 work/day-care facilities or elswhere No educationEducation at the Arduin Academy Living with 360 other Living with ca 3 other clients clients + neighbours CHANGES FOR CLIENTS

  23. 17 years agoNow 1 place to live Living in community (institute) in a normal home Same place to work Working in 1 of the 60 work/day-care facilities or elswhere No educationEducation at the Arduin Academy Living with 360 other Living with ca 3 other clients clients + neighbours Group planning Person-centred plann. CHANGES FOR CLIENTS

  24. 17 years agoNow 1 institute in 1 city 145 homes in 25 villages/cities CHANGES FOR ORGANIZATION Before Now

  25. 17 years agoNow 1 institute in 1 city 145 homes in 25 villages/cities Some transport Many transports CHANGES FOR ORGANIZATION

  26. 17 years agoNow 1 institute in 1 city 145 homes in 25 villages/cities Some transport Many transports Mainlycentral facilities More local facilities (centralexperts/largeoverhead)(local experts/less overhead) CHANGES FOR ORGANIZATION

  27. 17 years agoNow 1 institute in 1 city 145 homes in 25 villages/cities Some transport Many transports Mainlycentral facilities More localfacilities (centralexperts/largeoverhead)(local experts/less overhead) 1 central work facility 60 work/day facilities CHANGES FOR ORGANIZATION Before Now

  28. 17 years agoNow 1 institute in 1 city 145 homes in 25 villages/cities Some transport Many transports Mainlycentral facilitiesMore local facilities (centralexperts/largeoverhead)(local experts/less overhead) 1 central work facility 60 work/day facilities 360 internal clients 530 inhabitants (with support) + 120 day-care clients (inclusive educ.) CHANGES FOR ORGANIZATION

  29. CLIENT AND STAFF WORK TOGETHER IN A COMPANY

  30. 17 years agoNow 1 institute in 1 city 145 homes in 25 villages/cities Some transport Many transports Mainlycentral facilities More local facilities (centralexperts/largeoverhead)(local experts/less overhead) 1 central work facility 60 work/day facilities 360 internal clients 530 inhabitants (with support) + 120 day-care clients (inclusive educ.) ‘Paper’communication Intranet-comm. CHANGES FOR ORGANIZATION

  31. 17 years agoNow careworker supportworker head of unit coach one competence same + second talent maintenance service workplace with clients in society demand+executive demand // executive opinionoforganization opinion of clients everything is special normal if possible, special if needed CHANGES FOR STAFF

  32. EFFECTS ON CLIENTS • Better and more own choices • More personal growth • More self-esteem • Feel safer • Improvement of skills • More participation in Society • Very satisfied with social relations • More indepedance • Less behavioral problems/agression

  33. EFFECTS ON FAMILY • 81% satisfied about quality of support (25% very satisfied) • 92% great confidence in supportworkers • Positive about functioning of relatives • Huge improvement of Quality of Life • Family visits more often

  34. 1. Separation of 3 life spheres – • accommodation, work/daily activities • and leisure in society (inclusion) – • fundamentally important in this • process • 2. Value of work/day occupation (in • society) has been proved of • fundamental importance in one’s life. • 3. Education; life long learning CONCLUSIONS – Clients

  35. CONCLUSIONS– Change Strategy 5 key-change strategies Quality of ChangeQuality of Life • 1. Know where you are going to (strategic planning) • 2. Understand success on organizational and systemlevel (support of policymakers/finances is essential) • 3. Measure outcomes and evaluate • 4. Manage on outcomes (not on input) • 5. Keep system-oriented (also external enviromental)

  36. CONCLUSIONS – Implementation 5 fundamental principles for implementation • 1. Ensure Quality of Life for each client • 2. Focus on long-term outcome • 3. Use the support-paragdigm (also basis for finances) • 4. Empower both staff and clients • 5. Be proactive and change oriented (culture and values has to change too)

  37. Questions/Interaction What are the Challenges in Hungary? • On the level of the Person with ID? • On the level of Family? • On the level of Professionals? • On the level of the Organisation?

  38. Film about Arduin now

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