NGO
Comments on the draft text
Draft article 21
Proposal by Save the Children
Handicap International
Save the Children recommends the drafting of 2 separate articles: 21
health and a new article 21 A community based rehabilitation.
With regard to health we advise to follow a similar pattern as used
for the education article. Aiming for accessible and quality health
services for all, including disabled children and adults. The entire
article on health needs to be revised in a rights based instead of medical-technical
language.
Article 21 Health
Suggested change
States Parties recognise that all persons with disabilities have
full access to health services and the right to the enjoyment
of the highest attainable standard of health without discrimination
on the basis of disability. In particular States Parties shall:
a. provide persons with disabilities with the same range and standard
of health services as other citizens, including sexual and reproductive
health services
b. develop understanding of disability rights, respect for diversity,
non-discriminatory attitudes and a realistic perception of the capacities
of disabled people as users of health services for health professionals
at all levels, in line with the principles of this Convention
c. involve children and adults with disabilities and
their respective organisations in the development and monitoring of
health policies and of a code of ethics for public and private health
care, promoting quality, transparency and respect for human rights at
national level
d. ensure that respect is afforded to children and adults with disabilities
to give consent to or refuse medical interventions of all kind, in accordance
with their evolving capacities. Arrange decision-making in accordance
with earlier articles in this convention.1
With regard to rehabilitation we recognise the International Consultation
to review CBR and advise to further the recommendations in the final
wording of the text.
PROPOSAL Article 21 A (Community Based) Rehabilitation 2
1. States Parties undertake to comply with their obligations to resource
and co-ordinate Community Based Rehabilitation3 (CBR) as a comprehensive
strategy to move towards an inclusive society and service provision
for all, ensuring that disabled children and adults enjoy their rights
equally and without discrimination.
2. States Parties shall recognise CBR as a rights based strategy to
alleviate poverty and to address the direct and indirect socio-economic
costs of disability at the level of the individual, family and the society
at large
3. States Parties shall enhance a rights, social and economic approach
in the development of CBR services
a. Mobilising awareness and responsiveness towards equal rights among
disabled children and adults, authorities and the society at large
b. removing attitudinal, financial and infra-structural barriers in
society, and promoting inclusive public and private services for all,
particularly for disabled children and adults
c. consulting and strengthening representative organisations of disabled
children, adults as well as their families as primary stakeholders in
the full development of such strategies and services
d. enabling disabled children and adults to reach their potential through
the development of CBR strategies and services at all levels, which
are affecting attitude change at large and based upon priorities of
disabled children, adults and caregivers themselves to achieve their
rights
e. providing early intervention-, advisory-, functional training- and
respite services to disabled persons, families and caregivers in the
community aiming at self-reliance and full participation
4. States Parties shall equip and empower a national co-ordinating
disability body with the responsibility to manage CBR at national and
international level, assuring cohesiveness across national legislation,
strategies and service provisions and in line with all other disability
issues.
a. the consultation of and best interests of disabled children and adults
being paramount
b. access, affordability and quality of such services is assured at
all governmental levels for all children, adults and their families
c. ensure CBR is included in all community activities at all levels.
Footnotes
1. in relation to our comments with regard to article 9, 10, 13 of
this draft convention
2. Community Based Rehabilitation covers the full rehabilitation and
referral system at primary, secondary and tertiary levels. The term
as such also reflects a more comprehensive, social and rights based
notion and thus is preferred above the term rehabilitation which reflects
a primarily medical notion
3. States Parties need to act upon the Recommendations
of the WHO (2003) Report of International Review Community Based Rehabilitation
www.int/ncd/disability.
INTERVENTION BY REHABILITATION INTERNATIONAL
Article 21. Right to Health and Rehabilitation
Rehabilitation International is joined in this intervention by Disabled
People International (DPI), Landmine Survivors Network, World Union
for Progressive Judaism, European Disability Forum, Inclusion International,
World Federation of the Deaf, World Blind Union.
Our Core Proposal – Separate the Right to Rehabilitation from
the Right to Health
Like others we strongly advocate the separation of the right to health
from the right to rehabilitation. We believe that rehabilitation and
health are wrongly - and indeed dangerously - conflated into one draft
Article in the existing Working Group text.
We therefore propose a separate Article on the Right to Habilitation
and Rehabilitation. We would therefore propose deleting all references
to the term ‘rehabilitation’ in Article 21 and moving them to a new
and differently constituted Article 22.
This intervention focuses first on the proposed ‘right to rehabilitation’
and secondly on the ‘right to health.
Our Operating Philosophy of Rehabilitation – Optimizing Personal
Capacity for a Life of Participation and Choice.
Rehabilitation is eloquently described in the Standard Rules as:
A process aimed at enabling persons with disabilities to reach and
maintain their optimal physical, sensory, intellectual, psychiatric
and/or social functions, thus providing them with the tools to change
their lives towards a higher level of independence.
We would propose that the same or equivalent formula of words
should be used to describe and introduce the right to rehabilitation
in the draft text.
Such a broad approach as the one adopted under the Standard Rules is
echoed in many regional standards adopted throughout the world and should
be the one that animates our understanding of rehabilitation in the
convention.
Rehabilitation Includes Habilitation
We consider important that the term ‘rehabilitation’ should be clearly
understood as including both habilitation and rehabilitation. Habilitation
applies to those born with a disability. Rehabilitation applies to those
who acquire a disability.
Habilitating or rehabilitating persons with disabilities to the optimum
of their capacities should never detract from the overarching obligation
to re-order society to create more equal access. Rather, the core aim
of the convention should be to ‘redesign society to allow for the integration
of persons with disabilities rather than to predicate their integration
on their realignment with society’ (Prof Stein).
Three Reasons Why Rehabilitation be Separated from Health
There are at least four sets of reasons why such a separation should
occur.
First of all, it is clear that both habilitation and rehabilitation
aim at a broader goal than that of health – namely equipping people
with the wherewithal to function to the maximum of their own personal
capacity.
Secondly, rightly or wrongly, to depict rehabilitation against the
backdrop of health will only serve to heighten the fear of persons with
disabilities that those who exercise authority will impose rehabilitation
and might now be able to claim the imprimatur of international law.
This fear is wholly understandable given the experiences of many persons
with disabilities to date throughout the world. The so-called medical
model of disability may well be a parody of the true medical mission
which is of course to honour and serve human beings. But we cannot ignore
the legacy of the past. It would therefore be wiser to separate out
habilitation and rehabilitation in order to underscore the primacy of
the person as against the power of the expert over the process. This,
after all, is what the shift to the rights-based perspective on disability
is supposed to be about.
Thirdly, no matter how broadly defined (and we do support a broad definition
of health), the right to health does not and can never adequately capture
the full range of rehabilitation and habilitation services required
by persons with disabilities. These services range far beyond the traditional
health field to include functional rehabilitation, educational rehabilitation,
vocational rehabilitation, employment rehabilitation, etc.
Fourthly, there is an added danger in telescoping the right to health
with the right to rehabilitation. It could inhibit the capacity of any
future monitoring body from making an accurate assessment of the full
spread of rehabilitation services.
Two Reasons why Rehabilitation can be Properly described as
a Human Right
Can rehabilitation be properly denominated as a right under this convention?
We are convinced that it can and should for at least two sets of reasons.
First of all, at the level of ideas and values, it is obvious that
the philosophy of rehabilitation contained in the Standard Rules both
fits with, and indeed can be shown to flow from, the fundamental value
of personal autonomy or individual self-determination. We remind delegates
that the United Nations Commission on Human Rights has broadly equated
violations of the Standard Rules with violations of human rights (Resolution
1998/31).
This concept of autonomy undergirds all existing human rights conventions.
It is one of the golden threads that makes human rights doctrine come
to life. Indeed, it is one of the core principles put forward by the
European Union as a foundation stone of this convention. In sum, the
recognition of rehabilitation as a right is, in effect, merely a logical
development of the concept of autonomy - one that seeks to make that
concept real in the specific context of disability.
Secondly, the right to rehabilitation already finds some expression
under existing international and regional law. At a regional level and
since 1961, Article 15 of the European Social Charter – which is a binding
pan-European convention in the field of economic, social and cultural
rights - specifically contains a Right to Rehabilitation. More recently
(1999), rehabilitation is also specifically mentioned as one of the
priority areas in Article III 2 (b) of the Inter-American Convention
on the Elimination of all Forms of Discrimination against Persons with
Disabilities. Significantly, neither Article 1`5 of the European Social
Charter nor Article III 2 (b) of the Inter-American Convention speaks
of rehabilitation alongside a right to health. The latter contains useful
language to the effect that rehabilitation, inter alia, ensures the
‘optimal level of independence’ for persons with disabilities. Likewise,
at the global level, Article 23 of the Rights of the Child Convention
contains elements of a right to rehabilitation. In sum therefore, it
makes sense to universalize the right to rehabilitation beyond its various
regional expressions and beyond the field of childrens’ rights in favour
of all persons with disabilities. To do so would merely build on existing
international law.
The ‘Right to Rehabilitation’ should be Contained in one Article
rather than Scattered in the Text
An argument might well be made that there is no need for a separate
article on rehabilitation if the relevant ingredients of it were scattered
among the relevant substantive rights dealing, for example, with work
and education. We disagree.
Why scatter and disperse the elements of such a foundational right
when it can be given the normative prominence it truly deserves in a
composite article?
Besides which, it would be more textually elegant to gather together
all the specific instances of the right into one composite article in
order to ensure that its various elements are read properly in light
of the underlying philosophy of freedom and choice.
The Need to Ensure that Rehabilitation is Never Imposed Against
the Will of the Person
Since rehabilitation, properly understood, is concerned primarily
with enhancing the person’s capacity for a life of freedom and choice,
it follows, inevitably, that rehabilitation should never be imposed
against the wishes of persons with disabilities. Too many persons with
disabilities have suffered in the past because their own wishes and
desires were studiously ignored by those in authority.
We Propose the Following Text on the Right to Rehabilitation
The relevant regional standards including, for example, Recommendation
R(92) 6 of the Council of Europe as well as Rule 3 of the UN Standard
Rules should also be used as a basis for discussing content. The relevant
part of this Recommendation contains useful language on the rehabilitation
rights of children (IV.2.7).
We propose that specific language should be added on the particular
rehabilitation rights and needs of women and girls with disabilities.
We are of the view that the resource that persons with disabilities
represent to each other in the context of rehabilitation should be emphasized
through the acknowledgment and nurturing of peer support in the text.
We view rehabilitation in the community as an important tool in the
advancement of habilitation and rehabilitation.
With respect to the content or the basic ingredients of the proposed
right to rehabilitation we therefore propose the following as a starting
point in discussion.
“Persons with disabilities have a right to rehabilitation in
order to enable them to reach and sustain their optimum level of functioning
and to live an independent life of their choosing in the community.
Rehabilitation shall be understood as including habilitation as well
as rehabilitation. Toward this end States parties undertake:
1. To maintain and develop a comprehensive and integrated range
of functional rehabilitation services including, occupational, vocational,
and educational, and associated assistive technology and to ensure that
such rehabilitation is in alignment with medical rehabilitation.
2. Take steps to ensure that information with respect to rehabilitation
services is widely available and accessible to all persons with disabilities
including their families.
3. To ensure that access to such services will be open to all
persons with disabilities without discrimination of any kind and particularly
without regard to the severity of the disability.
4. To take steps to ensure that the specific rehabilitation
needs of women, girls, children and the elderly with disabilities are
appropriately addressed in order to ensure respect for their dignity
and particular needs.
5. To base the design of rehabilitation programs on the actual
needs of the person through a process of individualised assessment and,
towards this end, to actively involve the person concerned in the design,
organization and periodic review of their program.
6. To prohibit the imposition of any program of rehabilitation
against the wishes of the person concerned.
7. To take steps to ensure that rehabilitation programs are
available locally in the individual’s own community in order to ensure
that the rehabilitation process creates a meaningful pathway into a
life of full participation and inclusion in accordance with personal
choice.
8. To involve persons with disabilities and their representative
organizations in the rehabilitation process.
9. To ensure that all personnel involved in rehabilitation
are sensitised to the rights and needs of persons with disabilities.
Observations Regarding the Right to Health
We believe the right to health under the exiting Article 21 can also
benefit by breaking the link between it and rehabilitation. Consequent
upon breaking the link, all references to rehabilitation in the existing
Article 21 should be deleted.
With respect to the right to health we are of the view that
separate and clear language should be crafted to cover the highly specific
health care needs of women and girls with disabilities particularly
with respect to ‘sexual and reproductive health services’ as that term
is used in draft Article 21 (a).
We propose amending paragraph (j) in order to ensure that a
refusal to opt for certain health care services can never be used as
a justification to deny other services. We therefore propose that the
words ‘with respect to each service offered’ should be added after the
words ‘informed consent’.
We are greatly concerned by the rationing of health care resources
and services on the basis of disability. Our concern may already be
met by the existing text of Article 21 if the term ‘without discrimination
on the basis of disability’ in the introductory paragraph, when taken
with the reference to the ‘same range and standard of health…as provided
other citizens’ as used in sub-paragraph (a), is understood to mean
a prohibition of discrimination with respect to the rationing of health
care services and resources.
However, and for the sake of clarity, it might be worthwhile
spelling this out with more particularity along the following lines:
(xxx) prohibit the discriminatory allocation of health care
resources and treatment based on disability.
World Network of Users and Survivors of Psychiatry
Intervention on Article 21 (RIGHT TO HEALTH AND REHABILITATION)
- Full range of health care without discrimination – in institutions
of all kinds people are deprived of medical attention, and doctors
may see all health problems as related to the disability so when they
see a psychiatric diagnosis they ignore physical health complaints
and vice versa. This is in chapeau and para a of article 21.
- For us, the issue is not so much separating health and rehabilitation
as having access to diverse options for services. Much of what we
want, such as peer support, psychotherapy for all types of distress
including schizophrenia and psychosis, and counseling, may be included
under rehabilitation – but it should be understood that this is a
primary service for people experiencing psychosocial crisis or distress,
equivalent to primary medical care. For us, medical treatment by psychiatry
is one option among many, and should not be emphasized. We support
the proposal to separate health and rehabilitation because it challenges
the medical model of disability and will increase the diversity of
options available to us.
- Having diverse options is only meaningful if we have the right
to choose among them and not have treatments or interventions imposed
on us against our will. For this reason, it is necessary to include
provisions in both the articles on health and on rehabilitation requiring
free and informed consent for each service offered (as proposed by
New Zealand), to prohibit unwanted interventions (addressed in para
k) and to ensure access to and confidentiality of personal records
and information (second part of para j, and proposed consolidation
and amendment by New Zealand). Informed consent should be understood
within a context of supported decision-making as discussed under article
9 to preserve the individual right of choice without making it subject
to traditional tests of legal capacity.
- One further item is the need to explain “respite places” included
in para d. For people with psychosocial disabilities, this can be
an important alternative to psychiatric hospitalization in a time
of crisis.
Intervention by (Australian) National Association of Community
Legal Centres, People with Disability Australia Incorporated, Australian
Federation of Disability Organisations
Thank you Mr Chairman:
We support both government and non-government interventions which state
that rehabilitation should be removed from article 21 and developed
into a separate article, that both the health and rehabilitation articles
be strengthened and that reference should be made to community based
rehabilitation. With these interventions in mind, we now make the following
comments:
We support the interventions which recommend that there should be specific
mention of issues relating to women’s health. We also recommend that
there should be specific mention of the health and rehabilitation needs
of children and a requirement that these needs be elaborated and addressed
explicitly.
With regard to those interventions which recommended the involvement
of people with disability in the design and provision of health and
rehabilitation services, we also note that it is important to ensure
that people with disability are involved in the monitoring and review
of rehabilitation and health services.
The current wording of draft article 21 does not address two important
areas of health care – oral health (including dental care) and mental
health. It is our recommendation therefore that the text of the article
be amended to include explicit reference to these areas.
Oral care and mental health are vital for the proper enjoyment of life.
Oral care is often omitted from mainstream health care, but is equally
as important as other forms of medical care, particularly when it comes
to the ability to maintain proper nutrition, to avoid pain caused by
poor oral health, and to properly enjoy the act of eating. Without provision
for proper mental health care, people with disability may experience
increased levels of distress and impaired functioning which may impact
upon our ability to enjoy the other rights set out in this convention.
The article should be amended to specify that persons subject to compulsory
assistance on the basis of mental illness should not be accommodated
in a criminal justice institution. Likewise, if an individual is diverted
from the criminal justice system on the basis of mental illness, that
individual must not then be detained within the criminal justice system,
but should be provided with treatment within the health care system.
In any event, the provision of health care must never be used as a
punishment.
We note that sub paragraph (j) provides that health information cannot
be shared without the consent of the person with disability. We would
recommend an exception in the case of emergency. The exemption would
need to be carefully worded as to only apply in situations where the
exchange of information is vital to the preservation of life or in situations
where the absence of necessary information will lead to additional harm.
An obvious example is the situation involving the quick access of information
before providing an emergency intervention on a person who is unconcious
and thereby unable to give consent.
Finally, we note sub-paragraph (f) and the corresponding footnote (footnote
78) which makes reference to the issue of genetics. On this point, we
refer back to our intervention on article 8 – Right to Life, and reiterate
that genetic information should not be used as grounds for the elimination
of, or discrimination against, people with disability.
Thank you
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