Transcript Personhood and Supported Decision Making

What does Article 12 of the CRPD
Require?
Theoretical starting points, and
Questions/Implications for Law and
Policy
Michael Bach
Visiting Research Fellow, Centre for Disability Law and Policy,
National University of Ireland Galway
&
Executive Vice-President, Canadian Association for Community Living
July 2009
Outline
1. The Questions/Concerns
2. Key Terms and definitional challengeS
3. Law and Policy Reform Agenda – Article
12 CRPD
– Re-defining capacity
– Reasonable Accommodation – 2-step test
– Reforming substitute decision making
– Arrangements for Supported Decision Making
– ‘Freedom of contract’ and contract law
•2
The Question
• What steps should be taken in law and
policy reform to enable people with
significant intellectual, communicational
and/or psycho-social disabilities the
opportunity to enjoy full legal capacity, so
they can enjoy all the rights of the CRPD?
• What does Article 12 require of States
Parties in this regard?
•3
UN Convention – ARTICLE 12: EQUAL
RECOGNITION BEFORE THE LAW
• Non-discrimination in recognizing personhood
and legal capacity
• Access to supports to exercise legal capacity
– in all areas
• Safeguards for legal measures that
limit/remove legal capacity
•4
Definition of Terms – ‘Persons
and Personhood’
• Persons are those individuals who are accorded
the status of adult personhood on the basis that
they have personal identity, life plans and can act
reasonably and with capacity to pursue those
plans – by making decisions and entering legal
agreements to give effect to those decisions
– personhood is made in relationship with others who
come to recognize and know us as persons, and who
on that basis engage with us as persons in personal,
social and legal relations (contract, consent, etc.).
•5
‘Disability’
• CRPD Article 1: “Persons with
disabilities include those who have longterm physical, mental, intellectual or
sensory impairments which in interaction
with various barriers may hinder their full
and effective participation in society on
an equal basis with others.”
•6
‘Legal Capacity’ and ‘Personal
Decisions’
Article 12: a legally recognized status
shared on an equal basis with all other
persons to have rights and to exercise
those rights, with support as needed –
i.e. to enter agreements that give effect
to personal decisions that one wishes
to make, in the pursuit of life goals
•7
Decision-Making ‘Capacity’
• Ability to understand the nature and
consequences of a decision within the
context of the available range of choices;
and
• Ability to communicate that decision.
•8
Types of capacity needed to
enter agreements to give effect
to these decisions:
•
•
•
•
Contractual capacity
Capacity to make health care decisions
Testimonial capacity (to be a witness)
Testamentary capacity (to make a will)
•9
Types of personal decisions
Health Care Decisions
CRPD Articles: 15, 25, 26
Financial/Property Decisions
(purchase, sale, credit, investment,
will) CRPD Articles: 12(5),28
Personal Life Decisions (where to
live, relationships, participation,
access, employment, mobility and
supports) CRPD Articles: 13, 14, 15,
18, 19, 20, 23, 25, 26, 27, 28, 29, 30
Types of Decision Making
Status
• Autonomous – with assistance as needed
• Substitute
• Supported
•11
‘Autonomous Decision Making’
• Making decisions and entering
agreements by oneself, with informal
assistance (from personal advisors), or
formal assistance as needed/requested
(plain language, assistive devices
•12
‘Substitute Decision Making’
• A legally-authorized removal of personhood from
an individual, and a vesting of their ‘person’ in
another authority, for the purposes of making a
decision about that individual’s health care,
personal care/welfare, or property/finances.
• A set of ‘measures’ related to the exercise of
legal capacity that I think is likely protected by
Article 12.4 of the Convention, albeit with
‘safeguards’ on its administration.
•13
‘Assisted Decision Making’
1. Assistance provided to people to make
their own decisions and meet the usual
definition of capacity
– Plain language
– Assistive devices
– Interepreters and translators
– Advocates
2. Supported Decision Making Networks
– Assistance to those who don’t meet usual test
of capacity
•14
Supported decision making via a
Network…
• A group of trusted others an individual
chooses, to assist in:
–Expressing and acting on a
person’s will and intent
–Personal identity/story
• Based on a
‘fiduciary’ relationship
•15
Principles
• All individuals have a will – which can be expressed by
the individual… or interpreted by others
• A person’s will or intention forms the basis for
competent decision making…
• People are not inherently incompetent or incapacitated –
Decision-making processes are…
• All individuals have potential to evolve capacities
• Other party’s interests and liability concerns do not, on
their own, justify removing a person's decision-making
rights.
•16
Types of Decision Making Status
•community
Substitute
Autonomous
Supported
•17
‘mental incapacity’, ‘mental
disorder’, ‘mentally incompetent
• defenses in contract, tort and criminal law
– that limit liability and responsibility
• Ascriptions made by others – on the basis
of which they may choose not to enter an
agreement, or accept consent
• A legally-imposed status – on the basis of
which substitute decision making can be
imposed
•18
Is ‘disability’
=
‘mental incapacity’
‘mental disorder’
‘mental incompetence’ ?
In some instances, but not
necessarily so… disability is
long-term, mental incapacity is
decision or act-specific
•19
Criteria of personhood on which to
found legal capacity
 Individual Decision-making abilities
 Ability to express your intention to do or
not do something
 Ability to show that you have a ‘personal
identity’ that should be respected by others
Individual Decision-making abilities
– to give consent, contract
• Understand relevant
information
• Appreciate
consequences
• Act voluntarily,
autonomously
• Able to communicate
decision
•21
Ability to Express Intent and
Will
• A person expresses intention,
and demonstrates a will to do or
not do something. Expressing
intention and will projects a
person into the future, and
provides the basis
for others to act.
I want
to…
I don’t
want
to…
•22
Ability to show Personal
identity
An individual is recognized as being the same
person through time – often through personal
knowledge of others - with a life story or ‘narrative
identity’ that makes sense
•23
Justifying a more inclusive
conception of personhood
• Moving beyond a narrow ‘natural rights’ and
‘natural law’ based on individual reason and
capacity (Aristotle, Kant, Rawls)
• Towards a ‘social recognition’ grounding of moral
rights to personhood – ‘pre-political’ rights as a
basis for legal rights.
– People are seen by others as persons, their intention
and identity is a basis for trusted others to act.
– Reflects the recognition accorded to people with
significant disabilities by trusted networks
•24
Article 12: Towards a Law and
Policy Reform Agenda
• Re-defining capacity
• Reasonable Accommodation – 2-step
test
• For accommodations for autonomous
decision making status
• For accommodations for supported decision
making status
• Reforming substitute decision making
• Arrangements for Supported Decision
•25
Re-Defining Capacity – 2 steps
1. First and foremost, capacity is the ability,
with assistance as needed, to understand
the nature and consequences of a decision
within the context of the available range of
choices; and to communicate that decision,
with assistance as needed.
•26
Re-Defining capacity..
1. Where a person may not be able to meet these
tests even with assistance, capacity can also
mean the ability to express one’s intention and to
communicate one’s personhood (wishes, vision for
the future, needs, strengths, personal attachments
and field of care) to a trusted group of others
chosen by the individual who, in a fiduciary
relationship of trust, confidence and responsibility
recognize the individual as a full person, and
commit to acting on and representing that
person’s agency in accordance with his/her
intentions and personhood.
•27
Accommodations for
autonomous decision making
• Assistance in making a particular decision
– Communication (including assistive
technologies, assistance to other
parties)
– Interpretation
– Translation
•28
Accommodations for supported
decision making
• Assistance to make, communicate and act on
decisions about:
–
–
–
–
personal care
finances
health care
to make an oath, give evidence, direct legal counsel
• Respect from others (physicians, etc.) for
supported decision making
•29
•Community
System for Supported Decision
Making Networks
3. Law/policy protects
parties; funds ctty capacity
for support & advocacy
5. Personal network: listens, advises,
helps communicate and connect
4. Person chooses
network members
2. Law and policy provide for
status to network, back-up support,
registration, appeals
1. Law/policy
recognize right to DM
supports, protection
from abuse, advocacy,
& appeals
•30
Elements of the ‘System’
• Support Networks
• Recognition of Representation Agreements
(and test of incapacity to enter agreements)
• Registration System
• Community Resource to assist network
development and sustainability
• Independent monitoring and advocacy
• Legal confirmation of representation, capable
agreements/decisions, etc. – as needed
• Constitutional/Legislative/Policy Framework
•31
Representation Agreements
• A form indicating:
– Who will be representatives
– Who will be a monitor of the representatives
and decision making process
– Particular ways of communicating, expressing
•32
•34
Test of ‘incapacity’ for entering a
representation agreement
(a) whether the adult communicates a desire to have a
representative make, help make, or stop making
decisions;
(b) whether the adult demonstrates choices and
preferences and can express feelings of approval or
disapproval of others;
(c) whether the adult is aware that making the
representation agreement or changing or revoking any of
the provisions means that the representative may make,
or stop making, decisions or choices that affect the adult;
(d) whether the adult has a relationship with the
representative that is characterized by trust.
•35
•36
‘Reasonable Accommodation’
• CRPD Article 5 Equality and non-discrimination, para
3: “In order to promote equality and eliminate
discrimination, States Parties shall take all appropriate
steps to ensure that reasonable accommodation is
provided.”
• CRPD Article 2: “necessary and appropriate
modification and adjustments not imposing a
disproportionate or undue burden, where needed in a
particular case, to ensure to persons with disabilities
the enjoyment or exercise on an equal basis with
others of all human rights and fundamental freedoms;”
• A support as provided for in Article 12.3 to assist an
individual in being recognized as a person before the
law, and as ‘second to last resort’ prior to the
•37
imposition of substitute decision making.
Test of reasonable accommodation
for legal capacity
1. Is the person perceived as able to make and
communicate this decision on his/her own,
without support (functional test)?
2. If not, is the person able, with support, to
meet the tests of mental capacity sufficient
for him/her to be recognized as a legally
capable person for the purposes of this
decision/action? If so, what type of support is
necessary for this purpose?
•38
Test of reasonable accommodation
2a) Is the person able to demonstrate capacity (for
contract, testimony, informed consent) sufficient to be
recognized as a legally capable person, with functionspecific accommodations, or accommodations that are
needed to manage this particular decision/act –
interpreter, translator, augmentative communication
device, communication assistance to other parties,
decision-making assistant?
2b) If not, is the person able to engage representatives in a
fiduciary relationship (as in a supported decision making
network) who can communicate and represent the
individual’s personhood to others, based on their trusted
relationship and personal knowledge of the person
(accommodations for personhood/personal
representation)?
•39
… Test of reasonable
accommodation
• 3. Have reasonable efforts been made, to
the point of undue hardship, to provide
these accommodations including, where it
is determined that 2b accommodations are
required – investment in development of
personal relationships and personal
knowledge that would make personal
representation possible?
•40
Implications of Article 12 – for
Reforming Substitute Decision
Making
• As per recommendations of MDAC and
others – partial only, function-specific,
time-limited, reviewable, procedural
justice, independent advocacy support
• Must incorporate a ‘bridge’ to continued
access to reasonable accommodations to
demonstrate legal capacity
•41
Implications of Article 12 – for
Contract Law – preliminary ideas
• Usual concern – protection from unfair bargaining
• But capacity to contract – essential for giving effect to
personal decisions (e.g direct funding and personal
care, housing and labour markets, etc.
• How might we reform contract law to enable the
‘freedom of/to contract’ in the market for those who
might at first be considered without mental or
contractual capacity?
• On what grounds does the state reform/intrude on
contract law to enable contracting by those who might
be seen as not having the ‘contractual capacity’ to do
so?
•42
How might we reform contract law
to enable ‘freedom of/to contract’?
• The issue:
– Contracts can be voidable, in whole or in part,
on the basis that a party to the contract claims
and is found to be ‘mentally incapacitated’
– A defense that it would be hard to argue
should be completely removed from contract
law
•43
What about???
• Providing statutory protection for exclusion
clauses in contracts – that parties could
include in a contract on mutual consent –
that would exclude mental incapacity as a
defense for breaching the terms of the
contract, on the part of a party who is
making the agreement with the assistance
of an authorized representative.
• This would remove the standard liability
concern for parties to enter contracts
•44
How might the exclusion be
established?
• UK Unfair Contract Terms Act 1977
– A positive provision – a person can exclude
liability for breach of contract where…
• ‘Principles of European Contract Law’
“Parties are free to enter into a contract and to
determine its contents, subject to the
requirements of good faith and fair dealing,
and the mandatory rules established by these
Principles.”
•45
Principles of European Contract
Law
• Chapter 2:102 Intention
“The intention of a party to be legally bound by
contract is to be determined from the party’s
statements or conduct as they were
reasonably understood by the other party.”
• Chapter 3 – Authority of Agents
“Direct Representation” – “The principal’s grant
of authority to an agent to act in its name may
be express or may be implied from the
circumstances”
•46
On what grounds does the state
intrude to restrict liability and use of
the mental incapacity defense?
• On what grounds does the state provide for
protection against voidability of contracts on
a defense of mental incapacity, where a
party to the contract (the principal) makes
the contract via the representation of a
supported decision making network, a
person who might otherwise be seen as not
having the capacity to contract?
•47
Possible Grounds
• Freedom to contract is a basic liberty, an
expression of autonomy and will, essential in
according equal respect and dignity especially to
those socially and economically disadvantaged
(e.g. ‘freedom to contract’ in first US Civil Rights
Act 1866)
• To have one’s promises recognized as a basis of
trust in future action and delivery, is a mark of
respect of personhood – this opportunity to be
trusted in economic relations, should not be
denied to people with disabilities
(will theory and promise theory of contract)
•48
Possible Grounds…
• Contract – defined ‘relationally’ – brings
people into relations not only of selfinterest, but of solidarity – one comes to
be recognized as a member of the
community (relational theory of contract)
• People with disabilities have a right to
have others reasonably rely on them to
deliver on their obligations – as productive,
contributing members of society
•49
Possible Grounds
• Utilitarian/welfare economics and
efficiency theory – contract is a means by
which people can maximize their
economic and other benefits in markets –
as a group who is hugely
disproportionately living in poverty, this
opportunity should not be denied to people
with disabilities.
•50
How Supported Decision Making addresses
Exclusion From Legal Capacity
1. Ethical principle of respect for autonomy of others
2. Recognition of Right to liberty, self-determination
Statutory
3. Legal duty of others to be satisfied of capacity to act:
to contract, consent to health care, testify, direct cnsl.
Article 12
Requires:
Supports
4. Criteria of personhood: a) decisionmaking capacity b) intention and will
c) personal identity
Reasonable Acc.
6a)  Yes:
Capacity to Act Affirmed
5. Assessment against criteria
6b) X No: Substitute Decision
•51
Making – Remove personhood