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© Yo Dunn 2016
1. Why should legal capacity matter toautistic people, families andprofessionals?
2. The current situation around Europe
3. Autism strategies and legal capacity
4. Where do we go from here?
5. Discussion
Structure2 of 24
© Yo Dunn 2016
1. Why should
legal capacity
matter to autistic
people, families
and
professionals?
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© Yo Dunn 2016
• Adults have the right to make a wide range of legally significant decisions
• We can:
– Sign a tenancy agreement or own property
– Open a bank account, borrow money and use banking services
– Buy goods and services including travelling freely
– Sign an employment contract (be an employee or an employer) or owna business
– Refuse medical treatment and care including medication and admissionto hospital or a care home
– Get married
– Consent to sexual activity
– Vote and stand for election to public office
– Inherit money, goods and property
– Control where and with whom we live; who we want to haverelationships with; where we travel; how we spend our money; who canenter our homes and most aspects of our lives.
What is legal capacity? 4 of 24
The difference between legal andmental capacity
Legal capacityThe right to make
legally bindingdecisions
Mental capacity
The ability to makedecisions
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Legal capacity ≠ Mental capacity
Legal capacity = fundamental rights and freedomsthat adults are entitled to
Legal capacity = recognition in law of adulthoodand the right to control one’s own life
© Yo Dunn 2016
• In most countries there is a legal procedurewhere some or all of an individual’s legalcapacity can be taken away if they arebelieved to lack the mental capacity tomake their own decisions
• → Someone else making decisions about the adult’s life instead of the adult and lossof the legal right to choose differently
• Many Autistic people subject to theseprocedures
How does this affect Autistic people?6 of 24
© Yo Dunn 2016
• Surely some people actually can’t make decisionsfor themselves?
• Doesn’t this approach protect Autistic adults whocan’t manage their own affairs from legalresponsibilities they can’t manage and may notwant?
• Isn’t this Protective? Safer? Kinder?
• Isn’t this the best way to ensure family memberscan continue to help and support their loved onesinto adult life?
• Isn’t this the only way to give family members legalstanding to help an Autistic adult manage theiraffairs?
But …7 of 22
© Yo Dunn 2016
Ways of helping with decision making8 of 24
Substituted Supported
Guardianship model• P may not even be informed of
legal proceedings leading to beingplaced under guardianship
• P can be placed and subjected totreatment in institution withoutconsent
• P loses right to appeal to a court• Barred from voting, getting
married• Guardian controls whether P can
work, have children, haverelationships, sex, bedtime, food,drink etc.
Support model• P can choose support network• Supporters will help P to
understand and make decisions• If necessary, P can have a
representative to act as their agenton their behalf
• P has full access to information andright to attend meetings
• P can live in community with choiceof support
• P has right to vote, work, formrelationships, have children andparent – with support if needed
Autistic adult as object Autistic adult as subject
© Yo Dunn 2016
Does it matter?9 of 24
© Yo Dunn 2016
10 of 24“The right to legal capacity is one of the mostinvisible human rights issues in Europe today,
and is also one of the most important”(Hammarberg, 2013)
© Yo Dunn 2016
2. The current situation around Europe
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© Yo Dunn 2016
• Sets a high standard: full equality. But,ethically, is a lesser goal reallyacceptable?
• Article 5 requires non-discrimination – achallenge to any diagnosis based elementin decisions about legal capacity
• Article 12 requires equal recognitionbefore the law and specifically legalcapacity on an equal basis and support inexercising it
The UN Convention on the Rightsof Persons with Disabilities (UNCRPD)
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© Yo Dunn 2016
Substituted decision making systems which allowremoval of all or virtually all legal decision makingrights including right to vote and/or to appealcapacity decision to a court
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• Albania
• Bosnia and Herzegovina
• Belarus
• Bulgaria*
• Croatia
• Estonia
• Hungary (law reform legislated but
never brought into force)
• Italy
• Lithuania
• Luxembourg
• Macedonia
• Moldova*
• Norway
• Poland
• Portugal
• Romania
• Russia
• Serbia
• Slovakia
• Slovenia
• Switzerland (?)
• Ukraine
*Law reformunder discussion
© Yo Dunn 2016
Substituted decision making systemswhich allow retention of some legalrights including (at least) right to voteand to appeal capacity decision to acourt
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• Austria
• Belgium
• Czech Republic –
includes some provision forsupported decision making
• Denmark
• England & Wales
• Finland
• France
• Germany
• Greece
• Iceland
• Latvia
• Netherlands
• Northern Ireland
• Scotland
• Spain
• Sweden
© Yo Dunn 2016
Full Supported decision makingsystems which do not remove legalcapacity (UNCRPD compliant)
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• Republic of Ireland (enacted 2015, expected to be
brought into force late 2016)
Roughcategorisationof legalcapacity lawsaffectingadults withmentaldisabilitiesacross Europe
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© Yo Dunn 2016
3. Autism strategies and legalcapacity
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© Yo Dunn 2016
England
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• A passing mention of the Mental Capacity Act ina list of relevant policies and legislation
• Statutory Guidance 7.4
“It is important that those who support people with complexneeds, whose behaviour may challenge or who may lackcapacity should have a good understanding of supporteddecision-making; understand the principle that peopleshould not be treated as lacking capacity simply becausethey make an unwise decision; should consider theirwishes and feelings”
• And that’s all!
© Yo Dunn 2016
Scotland
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• Brief reference to the Adults with Incapacity(Scotland) Act 2000 in the context of its use to‘protect’ adults in safeguarding situations
• A longer mention in the Learning DisabilitiesStrategy (‘The keys to life’) but only a pagedescribing the Guardianship procedure underthe Adults with Incapacity (Scotland) Act 2000 –no critical evaluation nor proposals for anychange
© Yo Dunn 2016
European Union
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• EU Disability Strategy 2010-2020 Section 3 Equality
“EU action will support and supplement national policiesand programmes to promote equality, for instance by
promoting the conformity of Member State legislation onlegal capacity with the UN Convention.”
• But that’s the only mention. The issue is ignored in allthe other areas of the strategy – even though all areaffected by the issue
• No mention in the European Parliament’s WrittenDeclaration on Autism
• Autism-Europe’s manifesto – just general call for fullcompliance with UNCRPD
© Yo Dunn 2016
The UNCRPD on the EuropeanUnion
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“The Committee notes with deepconcern that across the EuropeanUnion, the full legal capacity of a largenumber of persons with disabilities isrestricted”Concluding observations on the initial report of theEuropean Union, UN Committee on the Rights of Personswith Disabilities 2015
© Yo Dunn 2016
4. Where do we go from here?
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Seek Law Reform
• To restore full legal capacity to Autistic(and other disabled) adults on an equalbasis with others (distinguishing betweenmental capacity and legal capacity)
• To replace substituted decision makingsystems with supported decision makingsystems in which adults retain full rightsand are able to choose trusted people tosupport them in exercising those rights
4. Where do we go from here?
PaternalismSupport toexerciseautonomy
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Seek shift in practice and culture
© Yo Dunn 2016
“Without legal capacity, we arenonpersons in the eyes of the law and
our decisions have no legal force”Thomas Hammarberg (2008)
Some practical issues:
• Lack of autism specific data
• Should we be prioritising particular countries asthe most urgent targets for campaigning?
• How does this relate to campaigning aroundclosing institutions, protection from abuse andDeprivation of Liberty?
5. Discussion24 of 24
