Fundamental Rights situation of persons with mental health problems and persons with intellectual disabilities: desk report The Netherlands

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1 Fundamental Rights situation of persons with mental health problems and persons with intellectual disabilities: desk report The Netherlands Authors: Anna van der Zwan, José Smits Stichting Perspectief, resource centre for selfdetermination and inclusion, the Netherlands august 2012 This report was commissioned by the European Union Agency for Fundamental Rights (FRA) as part of the background material for the Agency s publications on the fundamental rights of persons with mental health problems and persons with intellectual disabilities. The information, opinions and views in this report are those of its author(s) and the FRA does not bear any responsibility for either the reliability of the information or the views expressed therein.

2 Acknowledgement We would like to acknowledge the following persons and organisations for their contribution to the drafting of this report: Mr. dr. B.J.M. Frederiks, assistant professor health law, EMGO Instituut Vumc, Amsterdam., E. Noorthoorn, Kenniscentrum GG Net, Warnsveld., Hattem van den Burg, Ministry of Health, welfare and sports, directorate longterm care, The Hague., Trimbos instituut, Utrecht., Agnes van Wijnen, Visie in Uitvoering, Eexterveen., and C. van der Hoeven- Molenaar, Landelijk Platform GGZ, Utrecht. 2

3 Contents 1. EXECUTIVE SUMMARY COMMUNITY LIVING Freedom to Choose where to Live Access to Services and Facilities Offered to the General Population Support for Meaningful Community Participation Involvement in Decision-Making Regarding the Design and Provision of Support Involvement of Relevant Individuals in the Assessment Process Choice and Control of Relevant Individuals over Delivery of Support Involvement of Relevant Groups in the Design and Review of Policies about Support Services Forced Treatment and Other Support or Intervention Imposed on People Living in the Community Against their Will FUNDAMENTAL RIGHTS IN INSTITUTIONS Involuntary Placements Coercive Medical Treatments in Institutions Living conditions Personal Autonomy, Privacy and Relationships Choice and Control over Daily Living Activities in Institutions Privacy in Institutions Relationships in Institutions General Health in Institutions LEGAL CAPACITY ACCESS TO JUSTICE Routes to Remedies Within Institutions Routes to Remedies, Concerns and/or Good Practice Support and Awareness-Raising by Equality Bodies and/or Other National Human Rights Institutions/Structures (including ombudsman offices) RECOMMENDATIONS (optional) REFERENCES

4 1. EXECUTIVE SUMMARY There is a contrast between living conditions of people with a disability or mental health problem living more or less independently in society and people with a disability or mental health problem living in institutional, residential settings, albeit in a community. People with a minor disability or mental health problem living in society are mostly free to live where they like. They are provided with income, care and support. Government policy is to include people with disabilities "as much as possible" into society. The responsibility for inclusion is mainly laid on the shoulders of local municipalities. Participating more in society is thought to be possible only for people with minor disabilities or mental health problems. Especially where people with intellectual disabilities are concerned, this is the dominant view of organisations of the parents and family of people with disabilities. People with moderate and severe disabilities and severe mental health problems are considered unable to be included. They are offered a place to live in residential care. This residential care can be provided in large residential settings where people are used to living in groups, but is also provided in smaller group homes in the community. Living in small group homes in the community does not mean people can control their life or choose their own companions. The introduction of personal care budgets in 1995 has stimulated more self-controlled smaller group homes and has enabled individuals with more severe disabilities to lead an independent life in the community. Yet people with severe disabilities face difficulties living independently as they receive care and support based on the presumption that they live in groups. Those who want to live on their own do not receive enough financial support to do so. People living in institutional settings can be subjected to restrictive measures. Involuntary admission and restrictive measures are limited by law for people to whom a court order is given or who have consented to undergo such restrictive measures and enforced treatments under certain conditions. Theoretically, such involuntary treatment and restrictive measures can be given only in appointed institutions. 4

5 In reality, many people dependent on long-term care are submitted to involuntary treatment and restrictive measures without a court order or prior consent. The use of restraints has become part of daily routine in certain institutions. The use of restraints is sometimes so extreme that people can live separated and chained for long periods of time. Some 151 people were separated for over a year between 2004 and Available statistics on involuntary admission for people with mental health problems show a considerable increase in such admissions. Between 2002 and 2009, the number of people who were involuntarily admitted by court order grew by 40%. There is no clear explanation of this increase. Two proposed acts the Forced Care Act and Obligatory Mental Health Care Act are meant to strengthen the rights of people receiving involuntary care. However, there is concern that procedures in these proposed acts will lead to more people being institutionalised. People living in large or small homes provided by care providers have the legal status of patient. A doctor or other professional decides the individual care plan. When conflicts arise about the individual care plan, there is no guarantee of access to an independent complaints procedure. The Health Care Inspectorate does not handle individual complaints. The Equal Treatment Commission cannot advise in matters of care or living arrangements. There is no general awareness-raising campaign about rights for people with intellectual disabilities or mental health problems. The Dutch Government has not yet ratified the United Nations convention. A law to ratify the convention has been announced for There is a general lack of statistics and research on care, support, detention, living conditions, and access to justice for people with intellectual disabilities and mental health problems. 5

6 2. COMMUNITY LIVING There are no data available, nor surveys planned, on the number of people with intellectual disabilities or mental health problems living in the community independently or with their families as compared with living in residential settings. It is not known how many people with disabilities live in residential care institutions, hospitals, large or small group homes or how many people with intellectual disabilities or mental health problems live independently. Only estimates are available. Statistics are available on the financing of care or the number of people eligible for care. As the financing of care does not, as a rule, take into account the type of disability or age of a person, the statistics on financing care do not differentiate on these criteria. Eligibility criteria do take age and type of disability into account to a certain extent, but people may be entitled to temporary care, to different functions or to care provided by care providers and municipality combined, and may appear as care receivers twice or more in statistics. Moreover, different definitions of handicaps are used in various large-scale research and trend reports. It is for those reasons that researchers work with estimates and, in a number of cases, even cannot differentiate between intellectual disability, mental health problems or age groups. 1 Another difficulty in trying to assess how people with intellectual disabilities and mental health problems actually live in the community is that residential care takes many forms in the Netherlands. It can mean living in psychiatric hospitals or large residential institutions, usually at the boundaries of cities or villages. In these large residential settings, people usually have their own bedroom and share living accommodation. Residential care may be small group homes within the community and it can also take the form of providing enough support and care to live in a home of one s own, although that is exceptional. 1 Among others, Kwartel (2010) poses recently: we don t know how many people we have to consider as belonging to the target group, we even don t know how many persons with a disability are clients of these services. Kwartel, A.J.J. van der (2011). Brancherapport gehandicaptenzorg Utrecht, KIWA Prismant. 6

7 The national government does not endorse a formal policy or use specific measures to promote community or independent living for people with disabilities. The policy aim is to make it possible for people with disabilities to live at home and within their communities for as long as possible. 2 In 2009, a policy measure granted 300,000 Euro to each care provider who would develop smaller group homes for a maximum number of elderly people with mental health problems instead of larger residential institutions. Smaller group homes would in this case accommodate groups of a maximum of 24 people. The government stated that these smaller group homes were not to be considered the preferred option: It is not an obligatory concept to build small group homes. Diversity should remain. 3 The responsibility for inclusion of people with disabilities is mainly laid on the shoulders of local municipalities. There are no guidelines or directives by the national government. In 2006, local municipalities were provided with a brochure containing non-committal guidelines to include the interests of people with disabilities in local policies. 4 The main care and support systems for people who need long-term care are based on the 1967 General Act on Extraordinary Healthcare Costs (AWBZ ) 5 and the 2006 Social Support Act (WMO) 6. Both acts serve people with all kinds of disability and chronic illness. The General Act on Extraordinary Healthcare Costs is meant to provide care for people with more severe disabilities who are regarded as being dependent on residential care, whereas the Social Support Act is meant to provide for people with less severe disabilities who can be included in society. This distinction is not formal. People with severe disabilities can receive support based on both acts and can choose to live outside residential settings. People with intellectual disabilities and mental health problems are usually entitled to receive care based on the AWBZ Schoonheim, J. (2009) ANED country report on the implementation of policies supporting independent living. Academic Network of European Disability Experts (ANED). Letter to Parliament: 25424, nr 94, VWS (2006). Aan iedereen gedacht? handreiking voor inclusief beleid. (Everybody taken into account? Guidelines for inclusive policy), VWS, Den Haag. 1967: Algemene Wet Bijzondere Ziektekosten AWBZ 2006, Wet Maatschappelijke Ondersteuning: 7

8 The eligibility and financial criteria of this act are based on the assumption that people with intellectual disabilities and mental health problems live in groups in residential care. National policy sees living in a group of a maximum of six people as being fit for people with intellectual disabilities because this is an imitation of family life. However, it allows for groups of up to seven or eight people and up to 10 in older buildings. 7 Another argument for group residences is the costs. Living in a group is cheaper. When people with disabilities behave in a way that is disturbing or injurious to themselves or others, budgets may be raised temporarily and with special permission in order to make living outside group arrangements possible. National policy in 2003 was to provide every person living in groups in a residential setting or group homes with a private bedroom and to ensure a maximum of seven to eight group members, requiring improvements to be made for 10,250 places or people. In 2010, the improvement programme was half on its way. The improvements still have to be realised for 4,445 places or people. 8 In 1995, the introduction in the Netherlands of personal budgets 9 has proven itself to be an instrument that extends the choice to people with disabilities to choose their own living arrangements. The more innovative independent living arrangements and smaller group homes are usually financed with personal budgets. The personal budget system has so far enabled around 200 initiatives by the parents of people with severe disabilities to organise private parent-controlled group homes. 10 These 200 private parent-controlled group homes are supported by a private national organisation, the landelijk steunpunt wonen (LSW). 11 These parent-controlled group homes are different from other group homes because they were initiated by parents, are controlled by a board of parents and are financed through personal budgets. Financing through personal budgets allows for more flexibility in spending and in choice of personnel College Bouw Zorg 2003: Monitoring Gebouw kwaliteit in de gehandicaptenzorg (monitor quality of buildings in care for people with disabilities). The College is now part of a new organisation: Centrum Zorg en Bouw/ TNO. enzorg/ut555.pdf Letter to Parliament, Minister Klink of Health Welfare and Sport, 30597, nr 158. Persoonsgebonden Budget PGB: see Schoonheim, J. (2009) ANED country report on the implementation of policies supporting independent living. Academic Network of European Disability Experts (ANED). National organisation of private group homes (landelijk steunpunt wonen) :www.woonzelf.nl 8

9 2.1. Freedom to Choose where to Live (a) Extent of choice as compared with that of others and trends since 2005 People with Intellectual Disabilities or mental health problems Approximately 152,000 people with disabilities (elderly people who acquired a disability at old age are excluded) receive long-term care. Of this group, approximately 5,000 to 6,000 people have a physical disability. The rest have an intellectual disability and/or behavioural disorder. Of this group, almost 70,000 are entitled to residential care. 12 The procedure and criteria for entitlement for long-term care are set out in the 1997 Zorgindicatiebesluit 13 (care indication decision) and in the 2011 Beleidsregels AWBZ (policy rules). Being entitled to residential care does not necessarily mean that people actually live in residential settings. They may have chosen personal budgets, live in larger group homes, small group homes or rent their own apartments and receive intensive care at home provided by care providers. 14 Being entitled to residential care may result in lower care budgets than when people are assessed as able to live independently. This is a result of new financial arrangements for residential care under the 2008 Zorgzwaartepakketten (ZZP) (weighed care packages). Residential care is based on the assumption of living in groups and sharing care budgets. Thus, the resulting care packages and personal budgets based on these care packages can be lower than personal budgets based on individual care assessments. There is some jurisprudence in cases in which people living independently received lower budgets than before this rule applied Kwartel, Brancherapport gehandicaptenzorg 2009, Utrecht, Prismant. See for criteria paragraph 2.3 under (b) Eligibility and Take Up. Klerk 2007 Meedoen met beperkingen, rapportage Gehandicapten (Participating with handicaps), Den Haag, Sociaal Cultureel Planbureau (SCP). 9

10 In 2008, the College voor Zorgverzekeringen (College for care insurances) (CVZ) ruled 15 that a ZZP indication usually means less care at home than would be possible with the same indication in a residential setting. In 2009, a high court 16 decided that in the case of a young girl, an individual assessment of need and support had to be carried out because her right to a residential care package was in this case inadequate to provide her with enough care in her living situation. People with severe disabilities are more likely to be assessed as being in need of residential care and may receive a lower budget than if they were thought able to live in their own home. A 2002 study 17 revealed that of the 1,000 adults with an intellectual disability included in the study, 40% are living in large residential settings, 30% in smaller residential settings (this may be in the form of residential group homes in society), and 30% at home with parents or other family members. Of all the people with minor to moderate intellectual disabilities, 92% live in the community. Of this group, 30% lives in a group of four people, 30% with more then four people, 13% live alone, 5% with a partner and 8% live with family. 18 As regards people with mental health problems, no comparable data about choosing living conditions are available. In a pilot of five service providers at 14 locations, most of the people living in group homes in society were told they were not allowed to choose their housemates or where they could live CVZ February 2008, ( zzp-indicatie+en+extramurale+indicatie.pdf October 2009, Centrale Raad van Beroep (The Central Appeal Court): LJN: BK4423, Centrale Raad van Beroep, 09/4232 AWBZ-VV Klerk 2002, Rapportage Gehandicapten, (Disability Report known as the PSV study), Sociaal Cultureel Planbureau (SCP) in: Aned Country Report on the implementation of policies supporting independent living for disabled people, Academic Network of European Disability Experts (ANED). Cardol, M., Speet, M. & Rijken, M. (2007). Anders of toch niet? Deelname aan de samenleving van mensen met een lichte of matige verstandelijke beperking. (Different or not really? Participation in community for people with minor or moderate disabilities) Participatiemonitor Utrecht: NIVEL. 10

11 This concerned people with minor to moderate intellectual disabilities or mental health problems Access to Services and Facilities Offered to the General Population (a) Extent of Access and any Relevant Trends People with Intellectual Disabilities Most people with severe intellectual disabilities and mental health problems have difficulty accessing services and facilities available to the general population. According to a participation monitoring survey by Nivel 20 92% of people with minor or moderate intellectual disabilities live outside large residential settings, but only 27% of people in this group use public transport. Three quarters of people with minor or moderate intellectual disabilities have daily activities. This could either be paid, unpaid work or activities in a day-care centre. Of the people in this group who have daily activities, 80% do so in the company of other people with intellectual disabilities. Most of the people in this survey had regular activities in their spare time, and 76% do this in organised groups of people with intellectual disabilities. For 31% of them, the regular activities do not really fit their interests Zwan, Anna van der en Eline Noorman (2010), Samen werken aan een goed leven. Eindrapport Project Zeggenschap. (Working together to a good life. Final report project Selfdetermination) Utrecht, Perspectief (www.perspectief.org) Hoogen, P. van den, Cardol, M., Speet, M., Spreeuwenberg, P. & Rijken, M. (2010). Deelname aan de samenleving van mensen met een beperking. (Participation in society by people with a disability). Participatiemonitor ISBN Utrecht: NIVEL. 11

12 Service providers are now offering more and more segregated facilities in the community, which makes people with disabilities more or less out of sight but also brings with it that people with intellectual disabilities hardly really meet people without disabilities - in their homes, their jobs, during leisure activities 21 -, and takes away any need to participate in society. 22 People with severe disabilities or severe mental health problems are left out of the above-mentioned survey by Nivel, so no data are available for these groups. It is likely that their participation in society and use of general facilities is lesser as they are more dependent on segregated care in residential institutional settings. 23 Other research corresponds with these findings and the mentioned assumptions. People living in the community who receive care report that they have few friends and have a relationship with neighbours that extends only to greeting them. The most important person in their life is the professional who coaches and accompanies them. 24 An evaluation cycle at one service provider three times during a period of three years, performed by Perspectief, of people living in five group homes in the community, showed that people with disabilities want to have more friends. Staff members regularly tried but failed to support them in their desires. This failure is attributed to lack of time, but also to the focus on providing care and protection instead of focusing on supporting a person in all aspects of living in and with the community Perspectief (2007). Jaarverslag Utrecht: Perspectief. Perspectief (2008). Jaarverslag (Annual reports Perspectief 2006, 2007). Utrecht, Perspectief, kenniscentrum voor Inclusie en Zeggenschap. Schuurman, M., Mensen met verstandelijke beperking in de samenleving. Een analyse van bestaande kennis en aanwijzingen voor praktijk en verdere kennisverwerving. (People with intellectual disabilities in the community. An analysis of existing knowledge and indices for practice and acquiring knowledge). Utrecht, LKNG. Schoonheim J, J. Smits (2010) ANED report in social inclusion and social protection in the Netherlands, nov Kwekkeboom (red). (2006). Een eigen huis ervaringen van mensen met verstandelijke beperkingen of psychiatrische problemen met zelfstandig wonen en deelname aan de samenleving. (A home of your own... experiences of People with Intellectual Disabilities and with Mental Health Problems) Den Haag: SCP/Avans Hogeschool/PON. Zwan, Anna van der en Eline Noorman (2010), Samen werken aan een goed leven. Eindrapport Project Zeggenschap. (Working together to a good life. Final report project Selfdetermination) Utrecht, Perspectief (www.perspectief.org) Perspectief, overall report of evaluations at provider X, in: Schuurman & Zwan ( 2009) Inclusie, Zeggenschap Support, Garant. (Inclusion, Self-determination, Support: on our route to a welcoming community. Antwerpen-Apeldoorn: Garant. 12

13 The educational system in the Netherlands is largely segregated. Of all pupils with severe learning disabilities, 20% are included in mainstream settings and this percentage is declining. Of all pupils with severe behavioural disorders, a third are included in mainstream settings. Some mainstream schools never admit pupils with an intellectual disability or behavioural disorder. Of those that do, the percentage is not higher than 1.5% in primary education and 0.6% in secondary education. 26 Children or their parents can choose between special education and mainstream education. Parents stated in a survey that, in reality, the choice is unfair because mainstream schools can refuse pupils and school and parents share the view that mainstream schools lack support and knowledge to support pupils with disabilities. 27 Until 2003, special education could lawfully exclude children with severe intellectual disabilities. It was up to schools to interpret the children s ability to be educated. Usually schools required a level of understanding that could be observed in children over 24 to 30 months of age. 28 The 2003 Pupil-linked Financing Act 29 introduced obligatory central admission criteria to be used by special schools without this minimal requirement. Until now, the 1969 Obligatory Education Act (Leerplichtwet) 30 relieved parents of their legal duty to send their children to school if their child was unfit to receive education due to physical or psychiatric reasons. A medical doctor, psychologist or pedagogue may give such a statement. An estimated group of 2,500 children with severe intellectual and physical disabilities are still not in school but receive care in residential settings or day-care centres. 31 A number of conflicts between schools and parents were brought before the Dutch courts, usually after mediation by independent consultants Smits, J. (2010) ANED report on equality of educational and training opportunities for young disabled people in the Netherlands, Groeneweg, in Federatie van Ouderverenigingen (2006). Inclusief onderwijs: samen naar school. (Inclusive education: together to school) FvO Special, eerste jaargang nr 2, juni Utrecht, FvO. Tadema, A. C. (2007). From policy to practice : developments in the education of children with profound intellectual and multiple disabilities, Groningen, proefschrift RUG. In Dutch: Wet Leerling Gebonden Financiering (LGF) Leerplichtwet Veen. D. van (2009). Onderwijs en zorg voor ernstig meervoudig of complex gehandicapte kinderen/jongeren van cluster 3-scholen. WEC-Raad / VGN. Utrecht A lawyer involved in several cases is Mr P Boelens: 13

14 Courts in the Netherlands do not usually order access to schools in such conflicts, but this attitude seems to be changing. In August 2010, the Equal Treatment Commission 33 judged that the refusal of a pupil with a disability should be reviewed as the school had refused a pupil with an intellectual disability without proper investigation. In September 2010, a court in Den Bosch ordered a secondary school to accept a pupil with a mental health problem (PDD-NOS). 34 A recent survey by the Coalition for Inclusion states that the educational system in the Netherlands does not meet the requirements of the UN convention on the rights of persons with disabilities as the dual system of special and mainstream schools is willfully maintained by government and school boards. 35 The author of the survey, Dr M Schuurman, states that the requirement of participation is not met since 80% of children with a learning disability are educated in special schools. The requirement of accessibility is met only on an individual level provisions are made for individual students not on a general level. According to Schuurman, the requirement of non-discrimination is not met since students and parents of students feel they have no real free choice between regular or special schools. A second study 36 by the Coalition for Inclusion confirms these conclusions and provides more detailed information on the history of segregated education in the Netherlands and the effects of upcoming legislation that keeps the dual system in place. Of all people with minor or moderate intellectual disabilities, 18% work in a regular company, 40% work in sheltered workplaces among other people with disabilities, and 35% regularly attend a day-care centre. 37 There are no labour statistics on people with severe intellectual disabilities Advice nr LJN: BN7161,Voorzieningenrechter Rechtbank 's-hertogenbosch, KG ZA Schuurman M. (2010), Tekenen en dan? VN-verdrag voor rechten van mensen met een beperking, wat betekent dat voor Nederland. (Sign and then....? What does the UN Declarations on the Rights of Persons with Disabilities mean to the Netherlands?) Coalitie voor Inclusie, Utrecht, ISBN J. Smits, Het VN verdrag bepaalt: inclusief onderwijs is een recht voor alle kinderen (UN treaty states: inclusive education is a right for all children) ISBN Hoogen, P. van den, Cardol, M., Speet, M., Spreeuwenberg, P. & Rijken, M. (2010). Deelname aan de samenleving van mensen met een beperking. (Participation in society by people with a disability). Participatiemonitor Utrecht: NIVEL. 14

15 It is clear though that for most people living in residential settings there is no effort to help them find work in companies or sheltered workplaces. A sheltered workplace is limited to people who can produce at least a third of what people without disabilities can produce. People with Mental Health Problems According to a meta-analysis survey of the findings of four different surveys, among 3,000 people with mental health problems, 38 at least 35% of them experience unfulfilled wishes when it comes to having friends, a sense of purpose in life, work or useful activities, and intimate relationships. The researchers state that these findings give a representative image of the state of care and support to people with mental health problems in the Dutch population who need professional care. According to an inaugural speech by Jaap van Weeghel, professor of rehabilitation and participation at the University of Tilburg, 39 only 12% of the 110,000 people with mental health problems who receive care in the Netherlands have paid work. Of this group under psychiatric care, 50% have no other structured daily activity. Most are socially isolated. According to van Weeghel, isolation is as much a result of barriers in society as it is of their mental health problem. Segregation in the Dutch educational system is also visible in statistics for children with mental health problems. 40 Of all pupils with severe behavioural disorders, a third are included. Each year, 2,500 to 5,000 pupils are expelled from school without referral to another school. They are called thuiszitters 41 when they have to remain at home without schooling for more then two months Kroon e.a, Zorg en leefsituatie van mensen met ernstige psychische stoornissen. Informatie uit regionale monitors. (Care and life situation of people with severe mental problems. Information from regional monitors). Utrecht, Trimbos Instituut. Prof.dr. J. van Weeghel: Inaugural speech, Sept 2010 University of Tilburg: J. Smits, Het VN verdrag bepaalt: inclusief onderwijs is een recht voor alle kinderen (UN treaty states: inclusive education is a right for all children) ISBN ; Smits, J. (2010) ANED report on equality of educational and training opportunities for young disabled people in the Netherlands, Thuiszitters is a generally used term for students who are not (or no longer) welcome in school and so forced to stay at home. The term literally means persons who are sitting at home. Batenburg e.a Leerplichtige leerlingen zonder onderwijs BOPO-project ( ) 15

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