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Gouverneur Kremers Centrum – Universiteit Maastricht

Gouverneur Kremers Centrum – Universiteit Maastricht. Algemene informatie over de zorg aan mensen met een verstandelijke handicap in Nederland. Deze informatie gaat over het huidige beleid van VWS en de zorgsector, gericht op het realiseren van Community Care

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Gouverneur Kremers Centrum – Universiteit Maastricht

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  1. Gouverneur Kremers Centrum – Universiteit Maastricht • Algemene informatie over de zorg aan mensen met • een verstandelijke handicap in Nederland. • Deze informatie gaat over het huidige beleid van VWS en • de zorgsector, gericht op het realiseren van • Community Care • Deze presentatie bevat achtergrondinformatie • bij het college “Mensen met een verstandelijke handicap” • in het kader van Blok 3.4 • (Psychomedische problemen in de gezondheidszorg) • 05.02.2002 • Informatie: Wil Buntinx (W.Buntinx@beoz.unimaas.nl)

  2. Deze presentatie is gebaseerd op een lezing op: AAMR Region IX Conference “Building Community” Plenary session: Wednesday, November 14, 2001 Langhorne, Pennsylvania The Long Way to Community Care in the Netherlands Wil H.E. BUNTINX St. Anna Foundation / University of Maastricht Netherlands

  3. Intellectual Disability in the Netherlands: towards community care • NOOT: ‘verstandelijke handicap’= intellectual disability (ID) = mental retardation • Three topics in this presentation • 1. Policy • 2. Present State • 3. Proceedings

  4. Intellectual Disability in the Netherlands: towards community care • 1. Policy • Official Dutch policy: Community Care! • Policy Goals: • Quality of life for persons with intellectual • disability. • Enabling persons with ID to live a life of their • own choice. • Access to tailor made, flexible support in the local • community. • Participation of persons with ID in the local • community.

  5. Intellectual Disability in the Netherlands: towards community care • 1. Policy • Official Dutch policy: Community Care! • Policy Targets: • Housing : individual or small groups (4), ‘normal’ • housing conditions. • Normal school, work and leisure opportunities • and settings accessible to persons with ID. • Generic support functions for ‘general needs’. • Specialized support functions (medical,psychiatric, • psychological, educational) for special needs/groups • available in Centers of Expertise and Multifunctional • Treatment Centers.

  6. Intellectual Disability in the Netherlands: towards community care • 1. Policy • Official Dutch policy: Community Care! • Policy Conditions: • Changing regulations and legislation • Client based budgets - budget relative to • intensity of needs - ‘real’ choice of • provider. • Non-discrimination laws (e.g.: ADA like • legislation). • De-institutionalisation (shift from congregate care • to functional and modular system of support • provision).

  7. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Dutch ID system characteristics in a nutshell: • High degree of residential placement (50% of all • persons with ID are not living with their family or on • their own = 50% are in residential care). • High degree of institutionalization (66 % of all • residential clients are in institutions). • Group Home alternative to institutions used to be • fairly ‘institutionalized’ (e.g.: groups of 24) - (34% of • residential clients). • Recent implementation of client rights inspired • regulations (BOPZ; WGBO; Complaint Committees..).

  8. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Dutch ID system characteristics in a nutshell: • High degree of professionalization (availability of well • trained and professional staff on all levels). • ‘Centralized’ system (regulations; funding; inspection) • ‘Fair’ compensation (salaries) and work conditions • under national and field applicable arrangements • between employers and unions (2 years CAOs). • ‘Categorization’ of individuals and services. • Significant waiting lists (‘old’ solutions are easiest to • apply).

  9. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Facts and figures • Population: 16,000,000 • Number of persons with ID: (estimate 102,100 • (persons in any kind of service program) • 7 per 1000 • deep and severe intellectual disability: 52,700 • moderate and mild intellectual disability: 49,400

  10. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Facts and figures • Persons in institutions: 35,325 • Persons in group homes: 16,937 • Respite care homes capacity: 140 • Day care centers (children): 4,227 • Day care centers (adult): 11,938 • Consulting and social work services: 36,195 • (Social Pedagogic Services including referral)

  11. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Facts and figures (Residential population) • Age group Institutional Group Home • years % % • 00-19 9 20 20-49 62 73 50+ 29 7 • average 41y 44y

  12. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Facts and figures • Work force in institutions: 41,032 • Work force in group homes: 9,635 • Annual costs of institutional facilities: 1,700 Mil.$ • Annual costs of group homes: 392 Mil $

  13. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Dutch ID system characteristics in a nutshell: • Relatively high degree of satsifaction with present • service system (parents). • Low ‘sense of urgence’ with respect to change. • Questioning of Community Care solutions by parents • and professionals (“Are they better off ? ” - “ Society • and communities are not ‘ready’ to including persons • with ID. ”).

  14. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Fairly institution oriented? • HOWEVER • By 2001, between 25% and 30% of ‘institutional’ capacity has been transformed into small, community housing arrangements (individual, 2, 4 to 8 persons) and the numbers are growing fast! • By 2001 most traditional Group Homes have been transformed into small appartment and individual living arrangements!

  15. Intellectual Disability in the Netherlands: towards community care • 2. Present State • Fairly institutional oriented? • If so much is changing towards smaller facilities, more normal conditions, more community presence… • what is the problem?

  16. Intellectual Disability in the Netherlands: towards community care • 2. Present State • The more recent Dutch community oriented residential services however are still fully part of the institutional / group home administrative organizations and funding system. • So, there is no ‘real’ de-institutionalization but sort of ‘deconcentration’ of the institution into the community. • Advantages: - Controlled change; no system revolution; few extra costs • - Secure for all personnel involved • Disadvantages: - Slow proces • - Hard to change traditional ‘culture’ • - No significant competition or alternatives • from new services in the field

  17. Intellectual Disability in the Netherlands: towards community care • 2. Present State • In the past 10 years we witness considerable concentration of provider organizations through mergers. • This doesn’t result in downsizing of organizations but in growth towards bigger ‘concerns’. • Mergers include also merging ‘institutional’ services with ‘group home and day care services’. • Advantage: reshuffling traditional functions, capacities • and opportunity for building new services (more support • oriented). • Disadvantage: bigger organization scale leads to more • (budget) ‘control’ oriented culture and hampers client • and quality oriented (fast) change responses.

  18. Intellectual Disability in the Netherlands: towards community care • 3.Proceedings • Emerging new funding system: client based and intensity • of support related budgets (experimental). • Parents initiatives: e.g.: 36 houses initiated and run by • parents (serving 237 clients) by Januray 2000 and 75 more • underway. • Downsizing institutional campuses while maintaining • residential capacities: deconcentration. • Establishing a new referral system (independant of service • system). • Reducing waiting lists (still a problem).

  19. Intellectual Disability in the Netherlands: towards community care • 3.Proceedings • Experts are now usually employed by the service and part • of the service organization (residential or day care). This • pattern is now changing: • Emerging regional Centers of Expertise for regional • pooling of expert capacity and specialties. • Emerging regional centers for treatment of persons with • severe behavior problems. • Enhancing Support orientation (instead of traditional Care • orientation). • Increasing opportunities for supported employment (still • incompatibilities between “SSI” and “right to paid work”).

  20. Intellectual Disability in the Netherlands: towards community care • 3.Proceedings • Enlarging the number of persons in supported living • arrangements (now predominantly persons with mild ID). • Increasing participation of persons with ID in normal • school system (still restricted number). • Traditional administration, tracking and feedback systems • (registration, bookkeeping, data bases) fail to reflect • present changes in service delivery.

  21. Intellectual Disability in the Netherlands: towards community care • 3.Proceedings • Problems: • Aging (pushing waiting lists). • General needs = generic services (housing, health, income) • Special needs = special services (treatment, support). • Generic services are ill-prepared to the ‘new’ population. • Inclusion in Work settings is slow (labor market is • developping towards more knowledge oriented and • technology based tasks / attitudes). • Increase in employee turnover (towards 15 - 20%)

  22. Intellectual Disability in the Netherlands: towards community care • 3.Proceedings • Problems: • Concern about losing experts and expertise as the • residential centers (institutions) are being replaced by • community care settings (as has happened in Scandinavia). • The new policy towards Quality of life and Inclusion • requires a different ‘culture’ of the service system and • simply more money to attain the goals of equal • opportunities, especially for persons with multiple and • severe disabilities. • Organizational and management models of services • (combining flexible individual oriented services with large • organizations)

  23. Intellectual Disability in the Netherlands: towards community care • 3.Proceedings • Shifts: • Positive shift towards Quality of Life. • Positive focus on the individual and on needs of support. • Public image of persons with ID is diverse but not • necessarily negative. • Studies show positive achievements of inclusion as well as • problematic situations (social integration in the community • is much more difficult than physical and functional • integration).

  24. Intellectual Disability in the Netherlands: towards community care • Thank you… • Voor meer informatie • W.Buntinx@beoz.unimaas.nl

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