EUROPEAN CHARTER FOR PERSONS WITH
AUTISM
INTRODUCTION
This charter was presented at the 4th Autism-Europe
Congress, Den Haag, May 10th, 1992, and adopted as a Written Declaration
by the European Parliament on May 9th, 1996.
People with autism should share the same rights
and privileges enjoyed by all of the European population where such
are appropriate and in the best interests of the person with autism.
These rights should be enhanced, protected and enforced by appropriate
legislation in each state. The United Nations declaration on the
Rights of Mentally Retarded Persons (1971) and the Rights
of Handicapped Persons (1975) and other relevant declarations
on human rights should be considered and, in particular, for people
with autism, the following should be included. Over the years there
have been a number of ‘declarations’, ‘charters’ and ‘bills of rights’
drawn up on behalf of people with disabilities.
Although their intentions are clear and the spirit
and sentiments are to be applauded, none of them have addressed
all of the particular range of problems presented by autism. The
Nation States affiliated to the United Nations or to the European
Community have agreed to support these statements and thereby have
been pledged to incorporate them in some form or another, into their
legislative programme. If this had actually happened, this Charter
would be unnecessary. However most, if not all, states, while accepting
the principle of these statements, have failed to adjust their legislation
appropriately and completely failed to make available the range
of provision or deliver a quality of service which acceptance would
entail. Acceptance of a range of principles is simple and most states
would claim to do so and to uphold the requirements. However, no
state currently provides a fully satisfactory service.
These schedules are designed to explain precisely
what is meant by the Charter and what its acceptance entails. It
attempts to set out concrete examples by which compliance with the
various clauses of the Charter may be evaluated. The precise mode
of implementation of these basic rights will change as our understanding
of autism; our development of newer techniques and therapies; our
opinion of what constitutes best practice and the underlying values
and standards of society develop. These schedules will be reviewed
and updated regularly but the principles enshrined in the Charter
will remain.
1. THE RIGHT of people with autism to live independent and
full lives to the limit of their potential
This is the basic right of all human beings in
a civilised society. All the other requirements which follow are
means towards obtaining this substantial yet basic human right.
The consequences of being born with a disability of any sort should
not include the removal, dilution or debasement of those rights
enjoyed by all fellow members of society. Rather these rights and
privileges should be extended and enhanced in order to ensure that
the person with autism's potential is not crushed by ignorance,
fear, callousness or prejudice.
2. THE RIGHT of people with autism to an accessible, unbiased
and accurate clinical diagnosis and assessment
The importance of an accurate diagnosis
cannot be over-emphasised. Without such a diagnosis it is unlikely
that services appropriate to the particular needs of the person
with autism can be provided or maintained. The diagnosis should
be based upon the criteria accepted throughout the greater part
of the world as the most reliable and accurate. Although minor variations
in detail are acceptable, they are currently those described in
the 4th edition of the Diagnostic and Statistical Manual of the
American Psychiatric Association [see related details on ICD-10
from WHO]. Any diagnostic classification must ensure the acceptance
of autism as a long-term handicap rather than a result of psychological
insult or temporary psychosis. The diagnosis should be carried out
by competent agencies familiar with a wide range of psychiatric
disorders including autism. The diagnosis should be performed by
an agency which has no vested interest in the outcome of the diagnostic
procedures. The results of such diagnoses should be conveyed to
the person afflicted where appropriate and/or their closest relatives
or those responsible for their care.
3. THE RIGHT of people with autism to accessible and appropriate
education
Although some of the difficulties experienced
by people with autism are shared by those with other forms of disabilities,
there are particular difficulties inherent in autism which require
understanding and specialised educational techniques which are not
generally available in generic educational environments. Each individual
person with autism should be assessed by experienced educationalists
and their own particular needs determined. In order to avoid the
possibility of vested interests influencing decisions this assessment
should, wherever possible or appropriate, involve a substantial
input from those not directly associated with service providing
agencies. A personalised package should be designed to fit the needs
of the individual. This could include full integration into normal
school systems possibly with special programmes. In any case, teachers
should be aware of the particular needs of the individual and the
family. The range of available options should include the possibility
of special classes or schools for people with autism with, in situations
where it is required, residential facilities. The personalised programme
could well include elements providing a variety of experiences to
suit the needs of the individual. In the design of any personalised
plan, the use of the least restrictive environment possible should
be a primary consideration. Particular attention should be given
to pre-school age children since the benefits of tuition at this
stage are generally considered to be of especial importance. Parents
and other family members should be partners and actively involved
in the education programme since evidence suggests that such participation
is particularly beneficial in autism.
The progress of each child should be constantly
monitored against set criteria. Where a particular therapy is proving
effective, it should be pursued; where progress is disappointing,
the therapy should be discontinued and replaced by other programmes.
The range of possibilities should not be limited by dogmatic principles.
The provision of adequate educational facilities should not place
a severe financial burden on the families involved. The situation
varies between countries but in those countries where the custom
is for education to be free, people with autism and their families
should expect the same rights. In those countries where other systems
prevail the system of payment should be no less favourable than
that applied when children without disabilities are considered.
4. THE RIGHT of people with autism (and their representatives)
to be involved in all decisions affecting their future; the wishes
of the individual must be, as far as possible, ascertained and respected.
People with autism have a particular difficulty
in making decisions. This is the result of a) not being able to
envisage the consequences of decisions which are made and b) not
being able to express their views or opinions. Consequently, it
is tempting for those having responsibility for the implementation
of services to make the decisions on behalf of the person with autism
and the person for whom the service is provided is left frustrated
and disappointed at decisions made in his or her name. People with
autism do not always make a fuss or react violently to suggestion
made to them should not be taken as but acquiescence should not
be taken as agreement with decisions taken in their name. No effort
should be spared in explaining the options available even though
this may be time consuming and the explanation, perhaps, unintelligible
to the subject. No attempt should be made, by the enquirer, to obtain
particular responses by deception or by the omission of significant
details. Exploiting the vulnerability of people with autism by allowing
them to express an opinion based upon false, incomplete or inadequate
information is worse than allowing no choice at all. Even those
people with the severest forms of handicap can usually make their
preferences evident. Even when unable to verbalise, their behaviour,
equanimity, pleasure or distaste are easily observed and their preferences
determinable by those who know and understand them. When, and only
when, it remains impossible to determine the wishes of individuals
concerned, the person's relatives, carers, advocates and friends,
(particularly those suffering from autism,) may need to be consulted.
Even when the person with autism is believed to be incapable of
understanding proceedings where decision may be taken which affect
them directly, they should be present during that discussion. Their
physical presence will help to focus the minds on the subject of
discussion and will expose and minimise comment which undermines
the dignity and humanity of the individual. It is recognised that
it may not be in the best interests of the person with autism that
all his/her wishes be acceded to but where such wishes, expressed
or not, are over-ruled explanations should be provided. All records
of agreements, statements and minutes from such meetings should
be subject to the approval of the person with autism and/or their
representatives.
5. THE RIGHT of people with autism to accessible
and suitable housing
Satisfactory housing is a basic requirement for
any form of civilised life. The person with autism will be unable
to obtain housing or to pay an economic rate for it without the
support of others. Such help as is required should be available
from the public authorities. The type of housing provided should
be commensurate with the needs, abilities and, as far as possible,
the wishes of the individual concerned. It should not be remote
and isolated from society but should, as far as practicable, be
in an area where support from family and friends is possible. The
type of housing should correspond, in quality, with that available
to the rest of the population. Multiple occupancy bedrooms or a
ward structure where toilet and personal hygiene facilities are
shared by many would not be considered suitable housing. Any form
of housing should be of the least restrictive possible given the
needs and the safety of the individuals concerned.
6. THE RIGHT of people with autism to the equipment, assistance
and support services necessary to live a fully productive life with
dignity and independence.
The provision of appropriate housing is but the
first requisite in the creation of a satisfactory environment for
people with autism. The facilities within the housing should satisfy
the same regulatory and safety standards as are required in normal
housing. In any group situation, the facilities should permit withdrawal
from other members of the group when requested by the individual.
Furniture, furnishings, equipment and consumables should be ‘non-institutional’
in design and should encourage the expression of individual preferences
and interests. People with autism should be encouraged to take a
proper pride in their appearance. Clothing should be of the type
and quality available to the normal population. The provision of
old, second-hand, old-fashioned or uniform clothing is degrading
and stigmatising to the individual. Parents and carers must be conscious
of the possibility of enforcing their own standards of dress upon
their children with autism when such styles would attract attention
in much younger people. The same considerations would apply in other
areas such as hair styles, make-up or ornamentation. People with
autism will always need a degree of continuous support. In some
cases this support may need to be only at ‘arms length’ where the
mere knowledge that support is available is sufficient encouragement
for the person with autism. For the vast majority considerable support
will be required and should be available at an appropriate level.
Such support should not take the form of merely caring for the individual
by feeding, cleaning and assuming responsibility for all decisions.
The support should be designed to encourage independence in the
individual by helping him or her to take responsibility in these
areas. Although it is not always evident, people with autism do
take pride in their appearance, their achievements, skills and independence.
Developments in all these areas lead to an increase in the confidence
and dignity of each person.
7. THE RIGHT of people with autism to an income or wage sufficient
to provide adequate food, clothing, accommodation and other necessities
of life.
If the dignity of the individual is to be conserved,
the money required to purchase appropriate provision or support
the personalised plan should be sufficient. It should be allocated
to the person so that if alternative placements are found the money
to support it is available. Wherever this is feasible, it should
be paid in the form of a wage or salary to be used for the purposes
described above. Even where the support is directly attributable
to a work programme but is in the form of a grant, it should still
continue to go with the individual. The burden of payment for service
provision should be the ultimate responsibility of the community
at large and should not rest entirely with the family of the person
with autism. This does not, of course, preclude the provision of
additional items or services by the family. A financial allowance
of some sort should come under the direct control of the person
with autism. The person should be completely free to spend this
allowance on whatever he or she chooses provided that the chosen
items are not harmful to the individual or to others.
8. THE RIGHT of people with autism to participate, as far as possible,
in the development and management of services provided for their
well-being.
The person with autism must be encouraged to participate
in all decision-making processes which concern services provided
for their benefit. The denial of such rights is illogical and unnecessary
and appropriate mechanisms must be found in the design and implementation
of all such services.
In a group situation such as a group home or small
community, all clients should be consulted and given the opportunity
to be included in any decision making process which affects the
operation of the service. Autism presents especial difficulties
which may preclude the appointment, by the members of the group,
of a representative who can speak on behalf of all. The involvement
of each individual is, therefore, important. The service users should
be involved in decisions about all activities especially those connected
with leisure time, food, furnishings, decorations, `rules', time
tabling, outings, entertainment, work experience, future plans and
developments. Even when the person with autism apparently contributes
little to the final decision, their presence and potential for involvement
will limit patronising behaviour and will enhance the confidence
and self esteem of that individual.
9. THE RIGHT of people with autism to appropriate counselling
and care for their physical, mental and spiritual health; this includes
the provision of appropriate treatment and medication administered
in the best interests of the patient with all protective measures
taken.
As well as the formidable obstacles which their
condition presents, people with autism experience the same problems
as the other members of society and often in a more severe form.
Problems such as bereavement, separations and movement from familiar
surroundings are stressful for all of us but the effects can be
devastating for those whose understanding is incomplete. Counsellors
with an understanding of autism should be available to help, advise
and support the person through the difficult periods. In the same
way, people with autism are liable to the same range of health problems
as anybody else. Because people with autism are often unable to
articulate any feeling on health and well-being, carers must be
particularly alert for any evidence of health problems. Routine
health checks should be performed and the results recorded. Such
monitoring should cover all the areas which would be covered in
normal life. Tests should include checks on eyesight, hearing, dentition
as well as direct medical areas such as blood pressure, cholesterol
levels, etc. The fact that the subject does not complain or report
ill-health must not be taken as evidence of health. Where problems
are identified, the same standards of treatment should be applied
as would be the case with the general population. Where medication
is appropriate it should be correctly administered and the results
monitored. Particular attention should be applied for potential
side effects and where observed steps should be taken to eliminate
them either by removing the medication; altering the dosages or,
as a last resort, by giving other medication to minimise such effects.
Where it is desirable, circulating drug levels should be monitored.
The effectiveness of any medication must be reviewed regularly and
any unnecessary, ineffective or perhaps harmful medication or treatment
must cease or be withdrawn in the safest manner. Any medication,
therapy or treatment should only be used when it is of direct advantage
to the person with the autism. Such treatments must never be given
solely for the benefit of carers. Although the capacity for a person
with autism to comprehend the bases for religious faith may be impaired,
observations suggest that such persons can benefit from exposure
to religious experience. The opportunity for involvement in appropriate
religious fellowship must be available. This must be especially
true where the individual concerned or his family have expressed
an interest in spiritual matters. The religious experience offered
must, as far as is possible coincide with the wishes of the person
with autism or their family. In the same way, people with autism
should also have the right to opt out of religious experiences where
such a wish is expressed by them.
10. THE RIGHT of people with autism to meaningful employment and
vocational training without discrimination or stereotype; training
and employment should have regard to the ability and choice of the
individual.
As we become older it is natural to seek dignity
and increased self esteem through work which is satisfying, interesting,
worth-while and within our capabilities. People with autism should
have the opportunity to perform work which meets these same needs.
Too often people with disabilities are required to perform meaningless
and repetitive tasks which, apart from occupying time, have no ultimate
function. The fact that people have difficulties in communication
does not imply such a degree of stupidity that these tasks will
become, in any way, rewarding. The enforced completion of actions
which are obviously pointless is both confusing and degrading. People
with autism should have the opportunity to perform a variety of
tasks and share in a variety of work experiences. Only when such
a variety exists and people are aware of the options can there be
any choice of activity. People with autism, because of their inherent
difficulties, could require considerable help in performing relevant
duties. Efforts should be made to teach and encourage them to attempt
some new tasks which may, at first sight, appear challenging and
beyond their capabilities. Ultimately tasks must be found which
are appropriate to the abilities and accord with the desires of
the individuals concerned.
Wherever possible, attempts should be made to
seek employment within the community at large but, where this is
attempted, considerable support for the individual and advice for
fellow workers should be available. People with disabilities are
often given the unpleasant, repetitive and dirty jobs which are
avoided by other employees. Such discrimination must be avoided.
The activities of any individual must be reviewed regularly to ensure
that they reflect the developing aspirations and abilities of the
individual. Even when a person with autism is apparently satisfied
with his occupation, it may be appropriate to consider experience
with an alternative. It may be that the person still prefers the
original occupation and so the possibility of returning should exist.
All people with autism should have the opportunity to share in the
running of their own "homes". Although professionals may
assist or supervise such tasks, residents should be involved, at
whatever level is possible, in the cleaning, maintenance and food
preparation in their own home as well as tasks concerned with their
own cleanliness and clothing. Such work should not be left totally
to nursing or domestic staff.
11. THE RIGHT of people with autism to accessible transport and
freedom of movement
Without accessible transport, the means to freedom
of movement, life becomes a form of imprisonment. People with autism
should have access to those forms of transport compatible with their
requirement for mobility and their abilities. Those with sufficient
abilities should be encouraged to use the same forms of transport
as the general population. Training schemes should be utilised to
permit the use of public transport wherever possible. Sometimes
it may be appropriate for persons with autism to utilise cars or
bicycles and this should be encouraged where appropriate.
Some form of "mobility allowance", which
should be used for transport, should be included in any grant, pension
or allowance which is provided by the public authorities or other
funding agency. Where means of transport are provided by service
providing agencies, they should, as far as is practicable, be as
similar as possible to normal vehicles. The use of ambulances or
other prominently marked vehicles with an obviously institutional
appearance is stigmatising to those being transported and reinforces
the concept of "being different" which we are fighting
to eradicate.
12. THE RIGHT of people with autism to participate in and benefit
from culture, recreation, recreation and sport.
People with autism need relaxation just as much,
if not more, than non-disabled people. A range of activities which
cater for individual needs and inclinations should be provided.
A variety of activities which include participation in, as well
as observation of, culture, entertainment, recreation and sport
is vital. Individuals should be invited and encouraged but nor forced
to participate in such activities. Very often a degree of persuasion
may be necessary because of a lack of confidence resulting from
the autism itself. Whilst recognising that some activities are best
suited to a closed environment, wherever possible the utilisation
of outside facilities and involvement of non-disabled people is
advocated. Such activities should be interesting and varied. The
mere repetition of rituals and other meaningless activities is neither
stimulating nor therapeutic. People with autism can benefit from
exposure to high quality art, music and other creative activities.
13. THE RIGHT of people with autism of equal access to and use
of all facilities, services and activities in the community.
One of our main objectives is to allow and encourage
people with autism to take their rightful place in society. Access
to all the facilities available to normal society is a prerequisite
if such objectives are to become a reality. The barriers which prevent
active involvement are largely a result of misunderstanding. On
the one hand, the general public have a fear of all forms of disability
and need to be reassured, through education and increased awareness,
that people with autism will present no threat and can, through
their participation, enhance their own enjoyment of any activity.
On the other hand parents, carers and the people with autism themselves
must accept the challenges which normal life presents. People with
autism should not be prevented from attempting activities through
over protectiveness or timidity. Experience has shown that, given
appropriate encouragement and instruction, people with autism can
accomplish much which would, at first sight, appear beyond their
competence.
Embarrassment, awkwardness and confusion are less
common in the person with autism than in carers, the general public
and onlookers. Such responses will only be eradicated through experience,
explanation and familiarity. Without the right to use the range
of facilities and services available to the rest of the community
all education and training is pointless.
14. THE RIGHT of people with autism to sexual and other relationships,
including marriage, without exploitation or coercion.
The rights of people with autism should reflect
precisely those available to the rest of the population. They should
reflect the legal situation and social customs currently prevalent
in the country concerned. These rights should take particular account
of and be responsive to the particular nature of the difficulties
which autism presents. Particular attention should be applied to
the wishes of the individual. It is sometimes not difficult to persuade
a person with autism to voice a certain decision even when it is
clearly against their natural inclination. In order to avoid the
possibility of coercion through this mechanism, carers should ensure
than any participant with autism is aware of the consequences of
their decision and actions. Similarly, it may be difficult for a
person with autism to enjoy any form of relationship without encouragement
and from carers who are sensitive to the problem of autism. Many
people with autism, particularly those who are more severely afflicted,
show little interest in sexual relationships and will consequently
show little interest in such activities. Others will show much interest
but will lack the communicative and social skills necessary to express
their interest and desires. Advice and encouragement will almost
certainly be necessary for the attainment of successful relationships.
The necessary support should be available. Informed and sensitive
advice on birth control and genetic counselling are necessary. Where
marriage takes place, the partners should not be separated but be
encouraged to live together in the normal way. Where a person with
autism demonstrates the desire for sexual activity yet, through
a failure to understand the correct social conventions, is awkward
and unable to achieve his or her objectives, the use of powerful
hormonal drugs which diminish libido is inappropriate. Such actions
should only be considered where there is a definite risk of a serious
criminal assault by the person.
15. THE RIGHT of people with autism (and their representatives)
to legal representation and assistance and to the full protection
of all legal rights.
All citizens, whether or not they are experiencing
any form of disability, should share the same legal rights and expect
the same protection from the law. People with autism should not
lose those rights because they are unable to represent themselves
in a forceful manner. Rather, the protection afforded by the law
should be strengthened in recognition of this increased vulnerability.
It is unlikely that people with autism will be able to initiate
or sustain legal actions in support of their rights. Under such
circumstances, independent legal representation and assistance,
should be freely available to individuals or, if appropriate, their
carers. It is necessary for the care and treatment afforded to people
with autism to be constantly monitored by an independent agency.
This role should not be left entirely to the service provider. Where
any deficiencies are observed, these should be pointed out by the
monitoring agency and appropriate action taken to remedy them. Where
further action is appropriate and the person with autism may not
be able to adequately pursue his case, an independent advocate,
speaking on behalf of the person with autism should be provided.
Legal aid, in terms of finance, should be provided by the appropriate
agency when recourse to the courts becomes necessary in the interests
of the person with autism.
16. THE RIGHT of people with autism to freedom from fear or threat
of unwarranted incarceration in psychiatric hospitals or any other
restrictive institution.
In a civilised country, removal from society would
be reserved for those people who have been judged guilty, in a court
of law, of a serious criminal offence. The isolation from society
of people with autism who have committed no such offence is inappropriate
and unjustifiable. The routine incarceration of such people is evil
and a severe indictment of any country where the practice continues.
It is recognised that there could exist a very small group of people
with autism whose behaviour is still so difficult that psychiatric
intervention is appropriate. Such intervention should only be considered
when it is proven beyond doubt that the person with autism presents
an actual and severe threat to him or herself or other members of
society. Where, as a last resort, a psychiatric hospital is deemed
appropriate, the service must offer genuine educative and training
programmes which are subject to all the principles described in
this charter. Progress should be monitored and the situation reviewed
constantly to ensure rehabilitation into a less restrictive environment
at the first possible opportunity.
17. THE RIGHT of people with autism to freedom from abusive physical
treatment or neglect.
Any therapy used in the treatment of people with
autism must be potentially beneficial to the individual with autism.
Methods which depend upon any form of punishment for inappropriate
behaviour are not acceptable in society at large or when applied
to people with autism or any other form of disability.
In particular, no treatment which results in any
of the following is acceptable:-
Evidence of physical pain or discomfort;
Potential or actual physical effects such as tissue damage, physical
illness or stress;
Verbal abuse or insult directed at the person with autism;
Threats or intimations of future actions which cause fear or anxiety to the person with autism;
Denial of food, warmth, basic hygiene, or other necessities of life;
Exposure to humiliation, discrimination or degradation;
Neglect.
Where such practices occur, they should cease. If such actions are
serious or if they are continued after their unacceptability has
been established those responsible should be disciplined according
to local custom and law.
18. THE RIGHT of people with autism to freedom from pharmacological
abuse or misuse.
Medication should be used sparingly and only when
absolutely necessary. Wherever possible, the medical practitioner
should be able to discuss, with carers, the possibility of using
strategies other than those using drugs to overcome the particular
problems. Medication can never be acceptable as a substitute for
adequate care. People with autism have a right to medication only
when it is for their own benefit and in their own interests. No
medication should be provided when this is merely for the convenience
and ease of those caring for them. No medication, apart from that
which is freely available to the general public, should be administered
except under the direct control of a qualified and competent registered
medical practitioner. No effective medication is free of side-effects
and the prescriber must be confident of a therapeutic advantage
in any prescription. Where there is a likelihood of significant
side-effects, the individual must be monitored for their occurrence.
Those immediately in contact with the person must be warned and
alerted to any potential side-effects and these should be reported
immediately to the prescriber for his or her consideration. People
with autism do not always respond as expected to drugs so any abnormal
effects must be reported to the prescriber. All medication must
be of the quality and standard normally accepted in that country.
Medication must be given to the patient in the form specified and
must be given at the specified dosage, conditions and time intervals.
Prescribers should take steps to determine circulating blood levels
where appropriate and possible. The individual's response must be
monitored on a formal basis. Any ineffective medication must be
stopped. Where side-effects become apparent steps should be taken
to minimise them. Individuals should be monitored for the early
signs of the appearance of long-term effects such as dyskinesia.
Medication should, in any case, be reviewed regularly and wherever
possible minimised or replaced by substitutes which may be safer
or more effective. Except for short periods of time and in particular
circumstances, the use of major tranquillisers cannot be justified.
Certain atypical tranquillisers, used at low dosages, may be appropriate
for certain individuals on a longer term basis. Generally the use
of tranquillisers does nothing to help the basic autism but serves
only to sedate the afflicted person and to make him or her more
manageable. At the same time such drugs will impair learning and
decrease the happiness and understanding of the individual. Long
term effects, including the occurrence of tardive dyskinesias are
irreversible. Funding should be available, from the responsible
agency, to pay for appropriate medication.
19. THE RIGHT of access of people with autism (and their representatives)
to all information contained in their personal, medical, psychological,
psychiatric and educational records.
Although the extent of availability may vary,
it is a legal requirement in many countries that people should have
the right of access to all information about themselves which is
stored on official records [see related link]. It is unacceptable
that such information is available for others to read but not to
the person, or in the case of many people with autism their representatives,
most affected. Many instances have occurred where inaccuracies caused
by ignorance, misunderstanding, prejudice or malice, have appeared
in official records. Such inaccuracies can endure permanently unless
challenged and corrected; inappropriate or unfair treatment may
occur as a consequence. Official records should, wherever possible,
be agreed by the agency and the person (or their representative)
before becoming part of any official record. The care and treatment
of people with autism relies upon a partnership between many agencies.
Such a partnership can only be successful when all participants,
including those most affected, work together towards common objectives
and based upon the same information. The personal information stored
in such records should not be made available to outside agencies,
including researchers, without the express permission of the person
with autism or, if this is impossible, their representative.
Source: www.autismeurope.org
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