Content area
The Netherlands is a country where much is regulated, and several departments have made rules, regulations, memoranda and even laws related to people with intellectual disabilities. Large organisations that offer different forms of support dominate the system of care and support. The policy on care for people with intellectual disabilities has, generally speaking, developed away from segregation and towards integration and inclusion. Changes have led to improvement for people with mild and moderate disabilities, although the process is slow. At the same time, the situation for people with profound and multiple disabilities has deteriorated. For a real change in the support system, client-held budgets are believed to be of primary importance. However, this is still a slow development. This article describes the current organisation of care and support.
Full text
ABSTRACT
The Netherlands is a country where much is regulated, and several departments have made rules, regulations, memoranda and even laws related to people with intellectual disabilities. Large organisations that offer different forms of support dominate the system of care and support. The policy on care for people with intellectual disabilities has, generally speaking, developed away from segregation and towards integration and inclusion. Changes have led to improvement for people with mild and moderate disabilities, although the process is slow. At the same time, the situation for people with profound and multiple disabilities has deteriorated. For a real change in the support system, client-held budgets are believed to be of primary importance. However, this is still a slow development. This article describes the current organisation of care and support.
DEFINITION, LEGAL STATUS AND ELIGIBILITY
Terminology
In government papers, the term 'people with intellectual disabilities' is used. In practice, there are several terms used, like 'severe subnormality', 'mental handicap', 'feeble-minded people' and 'intellectual handicap'. For several categories of people, such as people with profound multiple disabilities, there are also several terms in common use, for example 'multiple complex handicapped'. Outdated terminology is frequently used, especially in medical circles. Only recently, the Health Department outlawed the use of the term 'idiots' (for people with profound intellectual disabilities).
Definition and eligibility
The definition of Luckasson et al (1992) is used in most official papers, and describes people with intellectual disabilities as people with:
* significant impairment of intellectual functioning
* significant impairment of at least two adaptive functions
* age of onset before 18 years.
In the Netherlands people with an intellectual disability have a legal right to services. They are entitled to receive care when they have been assessed as needing it. Until recently local governments decided whether or not a person would obtain some sort of care or funding. The local governments were not bound by central regulations. This meant that there were discrepancies between regions in Holland. Since January 2001 assessments for care have been provided by central government. This means that an assessment is formulated independently of the providers of care or the organisations that fund care. An assessment is given when a person belongs to the target group. This is determined on the basis of an IQ test and/or clinical observation. Subsequently the individual needs of a person with intellectual disabilities are mapped out.
The assessment advice consists of a description of the type of care and the amount of care that is needed, and how parents or legal guardians would like the care to be funded (in kind or in the form of a personal budget with which the person can purchase care). With this advice the person with intellectual disabilities can go to the organisation that funds care. These organisations are obliged to allocate the care that is needed. There are, however, waiting lists for day services, for community houses and even for residential facilities. There are also people who have a personal budget and in principle can try to buy the services they want and need, but they face many obstacles, especially very slow administrative processes and shortages of housing, personnel and jobs (Stoelinga & Zomerplaag, 2002a).
Service providers use eligibility criteria, but these criteria are not standardised. There are services that 'specialise' in either severe or mild disabilities. Services can refuse people on certain grounds, for example by telling them that there is no hoist so a person cannot be moved and therefore he or she is refused. There are services that refuse people with a pervasive need of support because they are more expensive to support - they 'specialise' in providing care for those with mild levels of disability. There are, all in all, too few community houses and even too few places in residential facilities. There are also long waiting lists for places in day services.
Legal status
In principle, adults with an intellectual disability regardless of severity of intellectual disability - are afforded the same civil rights as any other citizen. However, most people with severe or profound intellectual disabilities (and even some people with a mild disability) are considered unable to execute these rights and have a legal guardian (a parent, brother or sister) who is legally responsible for them. A formal representative can also be appointed by a court to represent the person. Most services believe that, if a person is capable of giving consent (for example about work or living situation), they should be offered the support or care they choose. As a consequence, there are still people who are restricted in their freedom to go where they please 'because it is in their best interest'. People with challenging behaviour especially, people with profound multiple disabilities and people with profound intellectual disabilities and autism are among those who have a very restricted life. With regard to children, the situation is clear; parents are legally responsible for their children.
Prevalence
In 1995, there were approximately 102,000 people with intellectual disabilities in the Netherlands (VGN/NZi, 1996; Haveman, 1998). Based on those figures, it was estimated that the number would increase to 111,000 in 2000. Further research in 2000 estimated higher numbers (120,000) of people with intellectual disabilities (Beltman, 2001; Rijks Instituut voor Volkgezondheid en Milieu, 2002). The number of people with intellectual disabilities is certainly increasing, especially among people above 50 years of age. There is also an increase in the number of people with severe or profound disabilities. This is a growing population, due to improved neonatal care and immigration rates (more than half of all children with profound intellectual disabilities are of foreign descent).
There are as many children with intellectual disabilities as there are adults and elderly people. It is not true that there are far more people with mild intellectual disabilities than severe disabilities numbers for severe and profound intellectual disabilities are even higher (Haveman, 1998). Research has shown that there are approximately 49,400 people with mild to moderate intellectual disability, 48,000 with severe intellectual disability and 11,000 with profound intellectual disabilities (Beltman, 2000).
POLICY FRAMEWORK
Ideology
The policy on care for people with intellectual disabilities, has, generally speaking, developed away from segregation and towards integration and inclusion. From 1985 onwards, the Government has introduced measures that aim at more freedom of choice for the person with the disability, and more independence from and flexibility in the services offered. This was in accordance with changes in policy, where health care was reorganised on a more free-market basis. In 1991, a government memorandum called Verstandig Veranderen (Sensible Change) said that a client-orientated budget should be introduced. This memorandum was followed by a long-range plan, called De Perken te buiten (Outside the pale) that stated that people with an intellectual disability are citizens just like every other citizen in the Netherlands, and that they should be given the same opportunities and choices and were entitled to support wherever they were limited in executing their civil rights. There were two points that stood out as special in this plan.
* All children should be enabled to go to school (before, it was common practice for children with intellectual disabilities not to go to school but to visit a day care centre; compulsory education didn't apply to them).
* The Government prohibited building of new residential facilities and reconstruction of existing facilities.
From 1995 onwards, partly because of the good economic climate, a lot of money was spent on implementing these long-range plans.
Education
To enable children with intellectual disabilities to receive education in schools, several schools for special education and day care centres started to co-operate. These co-operations are subsidised and supervised by the Government. Their aim is to develop suitable curricular activities for children with (profound) intellectual disabilities from the age of four. That means that all children from the age of four will have a right to education and that for all children from the age of five education will be compulsory, regardless of their intellectual and functional disabilities. It will still be possible to ask for an exemption from compulsory education, but the assumption is that it will be less easy than it has been so far.
Living arrangements
The Government is taking steps to prohibit the building of new residential institutions and reconstruction of existing ones. Private initiatives (eg several parents received funding so they could buy a house together for their disabled children) were stimulated. Several initiatives in supported employment have been developed and an occupational training package is now available. There has been a general move away from large institutions to smaller group homes (up to twenty-four people per home) and community houses (four to six people per house, with a professional present every day). The size of institutions has been reduced mainly by moving part of the population to an annex of an institution. These clients still use the facilities of the mother-institute, such as day services. On a smaller scale, services are achieving a form of supported living (between one and four people, living independently). These clients, mostly individuals with mild and moderate intellectual disabilities, live in a home of their own and receive care when necessary. They also benefit from supported employment.
In the present situation, 'special categories', such as individuals with severe or profound mental and multiple disabilities, elderly people with a mental disability, and people with mental disability and challenging behaviour, are 'left behind' in residential institutions. Although these service users would probably benefit from a community setting, most policy makers believe that, because individuals with profound disabilities need more staff support and require greater expenditure per person, they are 'better off' in residential facilities. It is still very difficult (both financially and practically) to establish community support services for individuals with high support needs. So changes have led to improvement for people with mild and moderate mental disabilities, although the process is slow. In a densely populated country like the Netherlands it is not easy to buy land or to rent or buy a house. There has been an explosive increase in the cost of housing, prices having almost doubled in less than five years. It has become increasingly expensive to buy houses for people with intellectual disability in the so-called normal community. Besides this, the funding to enable people with intellectual disability to live in small community houses and receive 24-hour care does not cover the costs (Stoelinga & Zomerplaag, 2002b).
Still, the process is continuing and will not stop. At the same time, the situation for people with profound and multiple disabilities has deteriorated. This group of people still live in residential institutions, but because of the transition towards community care institutions have stopped investing; buildings are in a state of decline, there is a lack of trained staff, etc.
One might still expect a fast decrease in places in residential institutions because most individuals with mild and moderate intellectual disabilities have moved out to a community setting. The reality is that, even if many clients move out into the community, residential institutions will not cease to exist, as there are still waiting lists. In 1996 there were 6,410 people with intellectual disability on the waiting list; in 2000 there were still 6,019 (Stoelinga & Zomerplaag, 2002b).To many parents, the most important thing is that their (grown-up) child has a supported place, either in or outside a residential facility. As long as there are far more clients than places in group homes or community services, residential services will still be necessary.
At the moment we have large organisations that offer different forms of support: residential, day activity centres, supported living and supported employment, and 'ordinary' housing in the community. The multi-location organisation is typical for the Dutch, who favour a consensus model. It is also a form of 'control' by the organisation over its smaller units.
SERVICE STRUCTURES AND MODELS
In the Netherlands there are a number of organisations, frequently based on religious beliefs, which provide services for, sometimes, more than a 1,000 people with intellectual disabilities. They use residential facilities, institutional annexes, group homes, supported living houses and several forms of day service: sheltered workshops as well as farms, cycle shops, toy shops, etc. These organisations are funded largely by central government and services are obliged to provide for people with intellectual disabilities.
There are several services for people with intellectual disabilities and their families, and most of them are funded by the Government. Table 1, below, illustrates the different types of service.
There are approximately 49,400 people with a mild or moderate intellectual disability in the Netherlands. Most of them live at home with their parents but move to a group home, a community house or a form of independent living when they are grown-up. Some go to mainstream schools. As grown-ups, they either hold a job (supported or otherwise) or are unemployed. A small number attend day centres for adults with intellectual disabilities.
About 48,000 have a severe intellectual disability, and most of them live at home with their parents till adulthood. Most of them go to school. Few children will go to a day centre for children with mental disabilities. At present schools for people with severe intellectual disabilities and children's day centres have started to move towards further co-operation and integration. This also includes services for children with a profound mental disability.
When the child grows up, parents face a problem in finding suitable housing, as most services (residential and communal) have a waiting list. Most of the adults with a severe mental disability visit a day centre during the daytime.
Almost 11,000 people have a profound intellectual disability, and approximately 9,000 of them can be classified as profoundly multiply disabled. As children, most of them live at home. A small number attend special schools. About 1,500 children with profound multiple disabilities go to a day centre where education and therapy are provided in an interdisciplinary way. When they reach adulthood, most parents still feel forced to find a place for their child in a residential setting. A small but increasing number of parents join forces and buy a house for their children. If they have obtained a personal budget, they can buy the professional support they feel is needed.
Services for parents/family whose children live at home
There is limited information on the number of people (adults) who still live with their parents. In three of the thirteen provinces in the Netherlands there were 2,573 people living at home in 1995. These provinces were among the least populated. One could therefore expect at least 15,000 people to be living at home. There is no reliable information on the number of people who live in community homes or independently.
When a child with intellectual disabilities lives at home with his or her parents, the parents can call upon family support services. There are services that support parents in daily life activities (eg someone comes in to help at dinner time), services that provide medical support and paramedical services. Psychosocial support can be given to parents and families to help them come to terms with having a child with intellectual disabilities. Parents and families may also receive educational and psychological support for bringing up a child with intellectual disabilities. There are special houses where children with disabilities can stay for a couple of nights a month and services that provide trained nannies to look after the child when the parents are not at home.
Semi-residential services
The following services are provided to people with intellectual disabilities during the day.
* Medical day centre treatment for children from the age of 0 to 13: The children return to their homes in the evening. The target group of the medical day centres are children whose development is (likely to be) disturbed by a combination of physical, psychological and social factors. Treatment is aimed at the child and its parents.
* Day centres for children: These centres provide services for children with intellectual disabilities between the ages of 2.5 and 18. The activities of a day centre for children are designed to give the child the opportunity of optimal cognitive and physical development.
* Day centres for adults: These are attended by people with intellectual disabilities from the age of 16 upwards. Usually they start going to a day centre when they are too old to go to school or a day centre for children. Day centres want to provide meaningful activities during the day. A wide range of activities are carried out in the day centres, for example making candles or soap, toys, cards, copyprint, art, woodwork.
Work
Supported employment services try to provide people with intellectual disabilities with a paid job, for example in a cycle repair shop, or helping in a gift shop or toyshop, often connected to a service.
Social working places provide work for people with intellectual, physical or psychological disabilities who can work only when the environment is adapted to their special needs. It involves industrial work, like packing or wrapping industrial goods.
Residential services
There is a great variety of group homes. There are 140 residential institutions that provide for 34,000 people, and 675 smaller group homes for adults (for up to 24 people) that provide for 18,500 people (Beltman, 2000). There are group homes for children, for adults, for the elderly, for teenagers, etc. The homes vary in number of residents (up to 24 people per home), the amount of support that is given and so on. During the day the residents go to school, a day centre or work. There are group homes situated in the community, almost always close to a residential institution, and there are group homes in the grounds of a residential institution. Community homes also vary in the people who live there, their age, the amount of support they need, etc. Community homes house up to six people each.
Supported living services are available for people with mild to moderate intellectual disabilities who live in a home of their own (between one and four people per home). They receive care as necessary. When a person wants to live independently, he or she will be trained to do so by supported living services.
In residential institutions residents receive support 24 hours a day. Residential institutions offer overall care: a place to live, work or activities during the day which are adapted to special needs, leisure activities, medical care, psychiatric care, support. A rather 'new' development in residential services is 'reversed integration', where part of the grounds of the former institution is sold to private buyers. Some of the people with an intellectual disability (most of them people with profound disabilities and elderly people with intellectual disability) continue to live in the grounds of the former institution, and non-disabled people build houses next to them. Instead of their going into the community, the community comes to them.
Respite care is a service that parents can claim when their child still lives at home. Most group homes have places where a person can stay for the week-end or for a couple of weeks. Some parents place their child with foster parents.
Schools
The education system in the Netherlands is divided into education for children with and for children without disabilities. Schools for children with disabilities are called 'schools for special education'. There are schools for children with mild intellectual disabilities (MLK) and schools for children with severe intellectual disabilities. In 1998, MLK schools had 40,426 pupils. There are 103 schools for children with severe intellectual disabilities (ZMLK); they teach a total of 9,229 pupils. Recent developments enable children with disabilities to go to mainstream schools. At the moment it is mostly children with Down's Syndrome who attend mainstream schools. Experts from schools for special education support mainstream schools, where ambulatory special education teachers support the children with an intellectual disability.
FUNDING OF SERVICES
In Dutch law, collective responsibility is laid down for people with mental disabilities. The financial regulations allocate budgets to services, both residential and non-residential. The size of the budget is related to the number of clients cared for. With a few exceptions, including people with severe challenging behaviour, the amount of money per client is the same. The service is responsible for the distribution of funds, and can therefore decide whether it wants to spend extra money on staff, new equipment or housing, etc.
Recently, all service providers have been required to indicate the level of support a client needs. This system of 'level of severity of support' will in the near future determine how much money is allowed to a service (or a private person). The same system will apply for the system of personal budgets, although the total budget for this purpose is still limited and not nearly enough to provide for all clients wanting a personal budget. The system of personal budgets functions alongside 'normal' financing, showing that we still lack legislation that fits the support paradigm (Stoelinga & Zomerplaag, 2002a). There are memoranda and plans, but no laws. New legislation and associated budgets are important if is really to happen. (It is not only the Government that is slowing this process down. When the Government wants to stimulate supported living, it can put financial pressure on services, but alongside the movement towards supported living there is a movement, for example by parent associations, towards the relative security of living in a sheltered world like the residential home.)
With a personal budget, parents have started to buy houses for their children; they want to provide their children with the type and the amount of care they believe is necessary (Baarfeld & Ramakers, 2001). This is a system that functions right outside the mainstream system. Parents can hold their child's budget and even become 'director' of their child's personal support plan. These initiatives are fairly new, so little is known about the efficiency and efficacy of these plans. For example, can parents manage to keep investing time in this form of communal housing? Will the parents of different children manage to work together and share the same ideals? It is known through research that a personal budget usually does not cover the costs (Stoelinga & Zomerplaag, 2002b).
Also new is a system where children with intellectual disabilities can go to foster parents, who are still under-paid. Most foster parents are people who used to work professionally in services for the intellectually disabled.
References
Baarfeld F & Ramakers C (2001) Kkinschalig wonen met een PGB. Evaluatieonderzoek naar kleinschalige woonzorgvormen die door ouders zelf worden opgezet voor mensen met een verstandelijke handicap. Nijmegen: ITS.
Beltman H (2000) Buigen of barsten? Hoofdstukken uit de geschiedenes van de zorg aan mensen met een verstandelijke handicap in Nederland 1945-2000. Proefschrift, niet gepubliceerde uitgave van het Noordelijk Centrum voor Gezondheidsvraagstukken.
Haveman MJ (1998) Epidemiologie in de zorg voor mensen met een verstandelijke handicap. In: GHMM ten Horn, W Buntinx et al (Eds) Handboek mogelijkheden. Vraaggerichte zorg voor mensen met een verstandelijke handicap. Maarsen: Elsevier.
Luckasson R, Coulter DL, Polloway EA et al (1992) Mental Retardation. Definition, Classification and Systems of support. Washington: AAMR.
Rijks Instituut voorVolksgezondheid en Milieu (2002) Data available at http://www.rivm.nl/vtv/data/kompas/gezondheidstoestand.
Stoelinga B & Zomerplaag J (2002a) Knelpunten in de samenleving. Raad voor de Volksgezondheid en Zorg. Zoetermeer.
Stoelinga B & Zomerplaag J (2002b) Bekidsontwikkeling verstandelijk gehandicaptenzorg. Raad voor de Volksgezondheid en Zorg. Zoetermeer.
VGN/NZi (1996) Landelijke registratie zorg- en dienstverlening aan mensen met verstandelijke beperkingen. Landelijke tabellen 1995. Utrecht: Vereniging Gehandicaptenzorg Nederland, Nationaal Ziekenhuis Instituut.
Websites
www.rivm.nl/vtv/data/kompas/gezondheidstoestand
Caria Vlaskamp
Petra Poppes
UNIVERSITY OF GRONINGEN, NETHERLANDS
Copyright Pavilion Publishing (Brighton) Ltd. Jan 2004