Submission to the UN commission on the Convention on the Rights of Persons with Disabilities for
the general comment on article 19.
Inclusion Netherlands is a Dutch association of people with disabilities, their friends and families. All
activities and publications are made possible by volunteers. We work without paid staff. Website:
www.inclusienederland.nl. Inclusion Netherlands is member of Inclusion Europe.
Executive summary
In this submission Inclusion Netherlands criticizes the lack of national policies to implement article
19. There is a lack of understanding of what it takes to make independent living possible for people
with more severe disabilities. There are prejudices among policy makers on the ability of people with
disabilities to make their own choices.
This submission gives a (national) overview of the number of people living in residential institutions,
the resulting severe difficulties in being fully included in society, and the absence of policies to aim
for more independent living arrangements for most of the people with severe disabilities. The
submission highlights the fact that austerity measures seem to affect negatively the few possibilities
for independent living whereas institutional care is not subject to austerity measures but seems to
grow in numbers and in funding. We conclude with recommendations.
Introduction
Inclusion Netherlands welcomes a general comment on article 19 of The UN CRPD. Although the
Netherlands has not yet ratified the CRPD (but plans to do so in 2016), implementation plans are
made. Inclusion Netherlands is worried by the lack of understanding by Dutch National Government
of what article 19 means and by the lack of clear coordinated action on implementing article 19.
The lack of understanding and the lack of coordination is reflected by
 the absence of surveys among people with disabilities on their views on independent living,
 absence of statistical data on independent living,
 absence of any policies to reduce institutional living for people with more severe disabilities,
 the absence of any policies to support people with disabilities in making choices and
 the absence of policies to financially facilitate independent living.
 the absence of a national disability Strategy. A proposed implementation plan for the UN
CRPD, currently under debate in the Dutch Parliament, contains no statistical data, no
concrete measures and no goals, with the sole argument that advocacy organizations and
municipalities need freedom to decide on their own actions.
View on independent living:
Article 19 states that persons with disabilities have to right to live in, participate in and be fully
included in the community, with choices equal to others. Inclusion Netherlands follows the view (as
outlined also by Inclusion Europe) that ‘independent living’ is a life in which people can make choices
and decisions as to where they live, with whom they live and how they organize their lives, including
choosing the support and other social, or health services.
Situation in the Netherlands
There are no exact data available on the number of people with disabilities living in the community,
independently or with their families as compared with living in residential setting. There are only
statistics available on the number of people eligible for and receiving support and care financed by
municipalities (usually people with minor disabilities) and people receiving residential care. The main
criterion for residential care is to be “in need of continuous assistance or supervision or a protected
1
environment”. The national Government does not endorse a formal policy or use specific measures
to promote community or independent living for people with disabilities. Policy aims at making it
possible for people with disabilities to live at home and within their communities "for as long as
possible".1
People with minor to moderate disabilities
Municipalities who provide care and support for people not eligible for residential care are legally
bound2 to provide support aimed at participation in society. National evaluations so far have not
shown an increased participation in society for people with disabilities. Most people with disabilities
have difficulty accessing services and facilities available for the general population. According to a
participation monitor3 only 27% of people with a minor to moderate disability uses public transport.
Three quarters of people with minor or moderate intellectual disabilities has "daily activities" mostly
in the company of other people with an intellectual disabilities only. Service providers tend to offer
segregated facilities in the community. People with disabilities are thus out of sight4 and society does
feel the necessity to share public space.5 Other research corresponds with these findings. People
living in the community receiving care, report to have few friends and have only a greeting contact
with neighbors. The most important person in their life is the professional who coaches and
accompanies them.6
Residential care for people with more severe disabilities
People with severe disabilities or severe mental health problems are left out of (the interviewing
process for) the above mentioned participation monitor. It is much likely that their participation and
use of general facilities is less as they are more dependent on segregated care in residential,
institutional settings7.
People who are in need of “in need of continuous assistance or supervision or a protected
environment” are eligible for residential care, based on the Act Long Term Care. This Act has no
formal aim for people to be included in society. Available statistics8 show that the number of people
eligible for and receiving residential care is increasing.
1
Schoonheim, J. (2009) ANED country report on the implementation of policies supporting independent living. Academic Network of
European Disability Experts (ANED).
2 Social Support Act 2015 (WMO) http://wetten.overheid.nl/BWBR0035362/2015-01-01
3 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 2006-2008. ISBN 978-90-6905-991-Utrecht: NIVEL.
4
Perspectief (2007). Jaarverslag 2006. Utrecht: Perspectief. Perspectief (2008). Jaarverslag 2007. (Annual reports Perspectief 2006, 2007).
Utrecht, Perspectief, kenniscentrum voor Inclusie en Zeggenschap.
5
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.
6 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. Finale report project Self-determination) Utrecht, Perspectief (www.perspectief.org)
7 Schoonheim J, J. Smits (2010) ANED report in social inclusion and social protection in the Netherlands, nov 2009 www.disabilityeurope.net
8 Dutch Bureau of Statistics CBS: Number of persons living in residential settings, financed based on the long term care act AWBZ. Data
2014: http://mlzstatline.cbs.nl/Statweb/publication/?DM=SLNL&PA=40013NED&D1=0&D2=l&D3=0,15,46&D4=3&D5=0,l&D6=(l-4)l&HDR=G1,G2,T,G4&STB=G3&VW=Thttp://mlzstatline.cbs.nl/Statweb/publication/?DM=SLNL&PA=40013NED&D1=0&D2=l&D3=0,15,46&D
4=3&D5=0,l&D6=(l-4)-l&HDR=G1,G2,T,G4&STB=G3&VW=T
2
Residential care can mean living in psychiatric hospitals or large residential institutions. Residential
care may also be group homes within the community or it can be provided (in a minority of cases) as
a personal direct payment used to provide support in one’s own home. An older study ( 2002)9
revealed that of the 1,000 adults with an intellectual disability included in the study, 40 % were living
in large residential settings, 30% in smaller residential settings, and 30% at home with parents or
other family members.
Living in a small group home does not mean that people have more choice and control in their own
lives. From a pilot study (2010) among five service providers at fourteen locations, most of the
people living in group homes told they were not allowed to choose their housemates or their place
to live.10
Financing residential care (including direct payment) is based11 on the assumption that people with
disabilities live in groups (from 6 up to 12 persons per group) in residential care and share availability
of support workers. The cost efficiency of group living determines the maximum level of support
people with disabilities can receive, even if they want to live in their own home.
The introduction in 1995 in the Netherlands of personal budgets12 has proven to be an instrument
that extends the choice for 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. It is acknowledged by national Government that these small initiatives have
difficulty in financing themselves properly and are therefore entitled to an extra small surplus on
their budget of 4300 euro per person per year. This surplus is not available for persons with a
personal care budget living independently. One other aspect that hinders independent living and
being included is the rule that personal budgets for care and support may not be spend on personal
assistance during work or leisure activities. 13
9
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).
10 Zwan, Anna van der en Eline Noorman (2010), Samen werken aan een goed leven. Eindrapport Project Zeggenschap. (Working together
to a good life. Finale report project Self-determination) Utrecht, Perspectief (www.perspectief.org)
11 Care and support financed base on the Act Long Term Care (Wet Langdurige Zorg 2014) http://wetten.overheid.nl/BWBR0035917/201601-01
12 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).
13 List on what is permitted as expenditure of Personal Care budgets:
http://www.pgb.nl/per_saldo/up1/ZaqlspzIE_Vergoedingenlijst_PGB_2014_1.0_Compleet.pdf
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Participation at the regular labour market is considered not possible for people with severe
disabilities. Of all people with minor or moderate intellectual disabilities, 18% works in a regular
company, 40% works in sheltered workplaces among other people with disabilities, 35% regularly
attends a daycare centre.14
Inclusive education is not provided. A survey by the Coalition for Inclusion states that the educational
system in the Netherlands does not meet the requirements of the UN convention for rights of people
with disabilities as the dual system of special and mainstream schools is willfully maintained by
government and school boards and 80 % of children with a learning disability is educated in special
schools. 15
According to a survey among 3000 people with mental health problems16, at least 35% of them
experience unfulfilled wishes when it comes to having friends, having a sense of purpose in life,
having work or useful activities, and having intimate relationships. According to Professor of
Rehabilitation and Participation at the university of Tilburg, J.van Weeghel17 only 12 % of the 110.000
people with mental health problems who receive care in the Netherlands have paid work. 50 % Of
them has no other structured daily activity and are socially isolated. According to Van Weeghel,
isolation comes as much as a result of barriers in society as a result of their mental health problem.
Exclusion of people with disabilities on a European scale
Current social exclusion among people with disabilities is not to be underestimated. European
statistics18 show that the rate of poverty among people with a disability is 70% higher than average.
The rate of employment for people with a disability is 50%. For people without disability the
employment rate is almost 75%.
Reports by ANED19, the European Disability Forum and the European Network of Independent
Living, claim that austerity measures as a result of the financial crisis in 2008, have a disproportionate
negative effect on benefits, provisions and support systems for people with a disability. It is
remarkable then that there are far less or no budget cuts on residential institutions and special
schools. For example: In England the Independent Living Fund was abolished and taxes were raised
that affected people with disabilities living independently, whereas budgets and admissions20 in
more costly residential institutions and assessment centers grow. In the Netherlands the long-term
care facilities take up 27 billion of which half is spend on care for the elderly and half on care for
people with disabilities and mental health problems. It takes up 3,5% of gross domestic production
and the macro budget is growing.21
Factors that hinder implementation of article 19 in the Netherlands and in many other countries.
Inclusion Netherlands believes these are factors that hinder implementation of article 19:
14
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 2006-2008. Utrecht: NIVEL.
15 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 people with disabilities mean to the Netherlands. Coalitie voor
Inclusie, Utrecht, 2010.
ISBN 978-90-817042-1-2 http://vnverdragwaarmaken.nl/images/stories/documenten/Studie-stand-van-zaken-VN-Verdrag.pdf.
16 Kroon e.a, 2009. 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.
17 Prof.dr. J. van Weeghel: Inaugural speech, sept 2010 university Tilburg: http://www.sozio.nl/haal-mensen-met-ernstige-psychischeaandoeningen-uit-sociaal-isolement/1023736
18 European Disability Strategy (2010-2020): http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=URISERV:em0047
19 Academic Network European Disability Experts www.disability-europe.net
20 An update on Winterbourne View, Mencap UK: https://www.mencap.org.uk/blog/update-winterbourne-view
21 Report by Dutch ministry of Health: De zorg: hoeveel extra is het ons waard? Ministerie VWS juni 2012
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1: There is a strong implicit believe that the right to live independently with equal choices and to be
included in the community cannot be realized for certain categories of people with disabilities. There
is an assumption that In particular people with intellectual disabilities, psychosocial problems and
people with complex needs cannot cope in modern society, cannot make choices (because of the
specific nature of their disability), or that they do not want to live independently. Their choice is
assumed to be for a more protected lifestyle within residential settings or with families. Inclusion
Netherlands believes this assumptions to be false. Inclusion Netherlands has the experience that
people with even severe disabilities who are properly supported and interviewed in a way that
enables them to express themselves, will tell that they want to live independently and are able to
make their own choices.
2. There is a strong believe that support to be able to live independently and to make choices is too
costly for people with intellectual disabilities, psychosocial problems and people with complex needs.
Inclusion Netherlands believes this assumption to be false. There is much evidence 22 that community
care shows better outcomes in terms of welfare at roughly the same costs.
3. There is a strong tendency in many countries that are relatively rich, to protect the historically
grown strong system of providing medical care and social support care, special education and
sheltered employment in segregated settings. This system of segregated care and support is mostly
controlled by care providing companies who are inherently unwilling to hand over control over
finances and policies and who are inherently unable to imagine a system in which people with
disabilities take control over their own support system. This economic factor is currently
underestimated.
Recommendations
Inclusion Netherlands does not pretend to present a comprehensive list of recommendations. We
would like to add the following to recommendations that are made by for Inclusion Europe. Our main
concern is our worry by the lack of understanding of what it takes to make independent living and
making one’s own choices possible for especially people with more severe and with intellectual
disabilities and psychosocial problems.
Therefore we recommend:
1. More effort should and could be taken to collect more relevant data on actual living
arrangements and the actual possibilities for people with disabilities to make their own
choices on living arrangements, on their support, and on ways of being included in society.
2. People with more severe disabilities should be supported to make their views and choices
clear.
3. Current prejudices on the ability of people with especially intellectual disabilities should be
fought by awareness raising campaigns among people with and without disabilities and
among policymakers.
4. Legal reform should be based on research on how to facilitate independent living and to
transform current support and care systems.
5. The economic factor of the care industry should be openly discussed. How can large scale
care providing companies transform themselves into providers whose policies and finances
are controlled by people with disabilities in such a way that it facilitates independent living
and being included in society?
22
USA: Research Shows Multiple Benefits of Community Placement: http://www.eoutcome.org/default.aspx?pg=336; Europe: Mansell, J.,
Knapp, M., Beadle-Brown, J. & Beecham, J. (2007) Deinstitutionalisation and community living – outcomes and costs: report of a
European Study; Finland: Common European Guidelines on the Transition from Institutional to Community-based Care (2012),
available at: http://deinstitutionalisationguide.eu/
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