Gouverneur Kremers Centrum – Universiteit Maastricht Algemene informatie over de zorg aan mensen...

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 ende zorgsector, gericht op het realiseren van

Community Care

Deze presentatie bevat achtergrondinformatiebij 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 ([email protected])

Deze presentatie is gebaseerd op een lezing op:AAMR Region IX Conference

“Building Community”

Plenary session: Wednesday, November 14, 2001Langhorne, Pennsylvania

The Long Way to Community Care in the Netherlands

Wil H.E. BUNTINXSt. Anna Foundation / University of Maastricht

Netherlands

NOOT: ‘verstandelijke handicap’= intellectual disability (ID) = mental retardation

Three topics in this presentation

1. Policy

2. Present State

3. Proceedings

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.


1. Policy


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.


1. Policy


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).


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..).


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).



2. Present State

Facts and figures

Population: 16,000,000Number of persons with ID: (estimate 102,100(persons in any kind of service program)7 per 1000

deep and severe intellectual disability: 52,700moderate and mild intellectual disability: 49,400


2. Present State

Facts and figures

Persons in institutions: 35,325Persons in group homes: 16,937Respite care homes capacity: 140

Day care centers (children): 4,227Day care centers (adult): 11,938

Consulting and social work services: 36,195(Social Pedagogic Services including referral)


2. Present State

Facts and figures (Residential population)

Age group Institutional Group Home

years % %

00-19 9 2020-49 62

73 50+ 29 7

average 41y 44y


2. Present State

Facts and figures

Work force in institutions: 41,032Work force in group homes: 9,635

Annual costs of institutional facilities: 1,700 Mil.$Annual costs of group homes: 392 Mil $

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. ”).



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!


2. Present State

Fairly institutional oriented?

If so much is changing towards smaller facilities, more normal conditions, more community presence…what is the problem?


2. Present StateThe 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


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.


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).


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”).


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.


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%)


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)


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).


Thank you…

Voor meer [email protected]

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