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Daily Summary related to Draft Article 21
RIGHT TO HEALTH
AND REHABILITATION
Prepared by Landmine Survivors Network
Volume 3, #6
January 12, 2004
Afternoon Session
Commenced: 3.25 pm
Adjourned: 6:05 pm
RIGHT TO HEALTH AND REHABILITATION
India objected to the first paragraph on PWD right to enjoyment of services
of the “highest attainable standards” pointing out that rights must correspond
to the ability of states to fulfill them. “While the range of health services
in the private and public sector can vary from the state of the art to
the basic, the commitment on the part of the state for provision of services
can only be of the basic level for all citizens.” However India is committed
to the obligation to ensure that PWD have access to services on the same
level as that of the general population. Rehabilitation must be decentralized
and should not be confined to a few centers of excellence. The draft Convention
text from India provides useful language in Article 9, highlighting the
need for trained health care workers. Along with early detection, prevention
is included in this context, because “so much of disability is related
to malnutrition, infectious diseases, poor sanitation, poor delivery practices.”
Since institutionalization is a common practice and will continue to be
so in many countries the Indian draft also suggests language that subject
public and private healthcare institutions, particularly psychiatric ones,
to regular monitoring.
Ireland supported the approach taken in the EU text Article 5 (e) which
corresponded with Paragraph 1 of the Chair’s text ensuring PWD the same
level of care as others as well as services required as a result of disability.
The meaning behind “acceptable” services as stated in this paragraph needed
clarification. The participation of PWD in decisionmaking should be in
the form of ensuring they enjoy equal rights in matters that affect their
lives; however the responsibility for the “formulation of legislation
and policy” rests with the government, with appropriate consultation from
PWD.
Japan concurred with Ireland’s position regarding both paragraphs calling
for “flexibility” in relation to how it deals with legislation and policymaking.
WBU drew a distinction between rehabilitation and “habilitation” both
of which should be addressed in this convention. Rehabilitation for children
is actually habilitation. Prevention remains a “strong objection” for
the purposes of this process, while this issue is important it should
be addressed by other UN Agencies with a health specific mandate. Rehabilitation
is not a closely connected sector to prevention.
Disability Australia Limited drew attention to Rules 1 to 4 of the Standard
Rules, keeping in mind that this convention must not fall below existing
standards. The principle of participation is very well developed here.
In addition, Paragraph 1 recognising the right to the enjoyment the highest
attainable standards of health, is in fact directly from the Alma Ata
Declaration of 1978 that also deals with PWD. This sentence has already
been accepted by states in this Declaration and therefore there should
be no problem with its restatement in this Article.
The origin of the word “acceptable” was clarified by the Coordinator
as emerging out of General Comment 14 from the Committee on Economic,
Cultural and Social Rights, in the context of cultural acceptability in
relation to private facilities for women, and tied to the concept of dignity.
South African Human Rights Institution (SAHRI) sought to expand Article
23 so that the CBR concept could be built into the second provision as
well as inclusion of the importance of reproductive health care services,
given the text’s recognition of gender based discrimination.
Canada suggested a definition of “acceptability” that most delegations
would be comfortable with be footnoted in the proposed text. The provision
on specific forms of health care that PWD may require as a result of their
disability is very broad covering any number of issues; perhaps what is
meant here is the provision of “essential” forms of health care as a result
of disability. Finally, in the last paragraph on the role of PWD in the
formulation of policy, “leading” could be replaced by “integral.”
DPI highlighted the fact that the provision of rehabilitation services
are often left by governments to local NGOs with no resources. These organisations
operate at a very small scale on “pilot projects” that are never up scaled.
These initiatives are too far between to make any impact on the lives
of PWD. However, as discussed at this meeting, international cooperation
measures can be used to support such initiatives. These measures do not
have to be in the form of funds, but also technical assistance and sharing
of experiences. The involvement of PWD in the provision of rehabilitation
services has been inadequately recognised. Neither the Mexican nor BKK
documents address the rights of PWD to have equal access to and benefit
from, public health programs such as those aimed at preventing diseases
like HIV AIDs or polio, or to those related to sanitation and safe drinking
water. Many such programs are not designed to include PWD; failing to
target PWD in this is a form of discrimination.
RI emphasized that the vast bulk of PWD are not sick, so the right to
health that they enjoy is the same right to health that everyone else
enjoys, except that they are not delivered appropriately. There are 3
aspects to this article: 1. the right to health; 2. an action orientation,
the right to rehabilitation, that makes real this right to health in a
disability context;, 3. participation in decisionmaking. This is supported
amply in ESCR General Comment 5, especially Paragraph 14, and the Council
of Europe’s Malaga Declaration of May 2002. The question of participation
in decisionmaking could perhaps be more generally dealt with in an overall
context under General Obligations rather than repeating this point right
by right. The key point in the General Comment that dealt with “acceptability”
is its stress on the importance of health to lead an independent life.
There is furthermore simple and straightforward language in the UN SR
that is key to the concepts of health and rehabilitation being addressed
here: “states should ensure the provision of rehabilitation services to
PWD in order for them to reach and sustain their optimum level of independence
and functioning.” (Rule 3). This underlies the approach to rehabilitation,
not for its own sake, not to be imposed upon people, but to serve “an
instrumental purpose” – to live a life of independence.
South Africa proposed that the title of this article be amended to reflect
that it does not deal with all aspects of rehabilitation, only medical
rehabilitation, or that it address other forms of rehabilitation. It further
noted that unless there are trained health care providers who are aware
of the rights of PWD, they will continue to be undermined. The Mexican
draft Article 13 provides useful language both on the training of health
care providers in particular, and for its general applicability as well.
Awareness raising is very important in particular in the area of sexuality
and reproductive rights, where perceptions that are humiliating to PWD,
remain, that they either should be, or are, asexual, and that they do
not need to avail themselves of reproductive health care.
WNUSP cautioned that access to rehabilitation as dealt with in other
drafts seem to assume people with certain kinds of disabilities. The two
paragraphs of Article 23 in the Chair’s draft are therefore acceptable.
Everything that PWD need should be included in this convention’s language,
but there should not be language that assumes that all PWD need a particular
type of service. For people with psycho social disabilities, separating
this article into the right to health and the right to rehabilitation
and supportive services, may be useful since they don’t need ongoing long
term supportive services or medical care. Peer support should also be
specifically included here as a type of service. PWD should have access
without discrimination to the full range of health care services that
should not be exclusive to the person’s disability. In relation to the
“acceptability” of the services, this gets to the issue of participation.
One way of making sure that services are acceptable to PWD is by giving
them a lead role in the formulation, delivery and evaluation of these
services. The language in the Standard Rules calls for PWD to have an
“influential” role. The Coordinator cited UNSR 3(7) and Rule 17 dealing
with the functions of national coordinating committees.
World Federation of the DeafBlind highlighted the problems deafblind
people have in communicating about their health or in understanding diagnoses.
In their interactions with the medical services “much goes wrong here.”
They cannot sometimes communicate with their own family. It is strange
to deal with rehabilitation and health in one article. As RI said, in
many cases rehabilitation is connected with education. There is also social
rehabilitation – the concern of deafblind people. All these aspects of
rehabilitation should be mentioned in some way, and the article should
not focus on wheelchairs etc.
Thailand concurred that rehabilitation should cover more than the medical
aspects and the difference from medical care needs to be drawn in this
article. The spirit of Paragraph 2 should be retained with modification
reflecting the role of PWD. The “prime movers” for getting legislation
in place should be PWD, even though the passage of laws is of course the
domain of government. As the SAHRI suggested, CBR should be mentioned,
but without any prevention aspects, which is “out of the range” here.
Mali called for further elaboration on what is meant by “highest attainable
standards” in Paragraph 1. If this refers to developed country standards
this language cannot remain. In addition what is the word “acceptable”
measured against – is it international standards, the state or the PWD.
The right to health is a universal right and the paragraph should reflect
this: “the right to enjoyment of good physical, psychological and mental
health is granted to all citizens including disabled persons. In that
respect health and rehabilitation services should available, accessible
and affordable. Paragraph 2 on the “leading” role of PWD goes “too far.”
Landmine Survivors Network suggested a reformulation of this Article
using the BKK (pg 119 Compilation) and Mexico (pg 102 Compilation) texts
to develop the elements of rehabilitation, which was a complex issue.
These elements would include support groups as stated in BKK Article 26
(2) (3) reflecting the importance of “reciprocal assistance,” of PWD helping
each other. With regard to the training of health care workers as South
Africa has called for, there is as the EU pointed out a need to focus
on measures of implementation, and Article 13 (a) of the Mexico text provides
useful language here that also supports the principle of autonomy. With
regard to promoting the participation of PWD, Article 13 (e) 4 of the
Mexico test suggests how countries can strengthen the capacity of PWD
to facilitate their participation in the implementation of the Convention.
Finally, as the WBU has said, prevention should remain outside of the
scope of this Convention.
Inclusion International took issue with the concept of rehabilitation
overall, preferring the term “participation” so as to avoid the medical
model. Should the word remain, the text of Article 23 should recognize
the different dimensions, including medical, vocational and social.
Disability Australia Limited raised a concern that the obligation to
ensure “affordability and accessibility” may not extend to health insurance
policies where discrimination on the basis of disability is common. If
these obligations do not shield the PWD from such discrimination they
should be reworded. Also perhaps health and rehabilitation could be dealt
with in 2 separate articles. Rehabilitation has wider implications in
terms of state obligations. Regarding prevention, the problems related
to malnourishment etc as raised by India, demonstrate why this should
be incorporated into this convention making it “truly progressive.” This
could be addressed in 2 sections, on ESCR and an adequate standard of
health, and in relation to international cooperation. In the latter case,
a new standard could be established to address these larger issues with
which disability has an important concern.
World Federation of the Deaf highlighted the importance of health care
workers with adequate knowhow. All PWD also deserve full information about
all aspects of their care. As has been mentioned by previous delegates,
the article should be separated into its health and rehabilitation aspects.
As WBU has said habilitation as well as rehabilitation should both be
dealt with in this convention, for people who are born with disabilities.
CBR should also be included. PWD have the right to act within their own
governments as they are citizens too.
New Zealand highlighted situations where PWD are denied essential services
because they are not deemed capable of providing consent for them. Dental
care as part of medical care should be considered as well as access to
seeing / hearing devices perhaps as part of the right to mobility – both
connected to the ability of the PWD to lead an independent life. Early
identification and intervention for PWD and families is very important
as they help both parties understand their capabilities. The training
of professionals is needed here because they can “set the tone” at this
early stage, and often they have outdated ideas of PWD full capacity.
Doctors themselves do not understand the progression of developing disability
nor do they know how to reliably get information from PWD, as a result
producing diagnoses based on misinterpretation from other sources. The
risk of overmedication is another area of concern, with research indicating
that PWD are left on drugs for too long, or given outdated drugs when
improved ones are on the market. Pharmaceutical actors need to be monitored
for this reason. Habilitation is appropriately used in this context; but
it also should be noted that while rehabilitation is seen as something
short term, it is often a long term need that includes the PWD not losing
a physical function rather than getting back what he has lost. Support
and training should be kept distinct from that which is more therapeutic
in nature. Finally, there remains the danger that providers see PWD as
more costly than others.
China highlighted the language in its draft text (pg 96 of the Compilation)
in Article 7 (1), (3), and (7) as necessary components of rehabilitation.
The same article also asserts the importance of PWD involvement in decisionmaking.
Korea supports Article 23 because it incorporates the right to health.
While it needs to be used with caution and in a limited fashion prevention
is critical to an understanding of secondary disabilities and ageing.
These issues have not yet been discussed, but can be found in BKK Article
26 2 (a).
Serbia Montenegro raised concerns of India, Canada, Ireland, Japan, on
economic obligations in this Article, and suggested qualifying the language
with “progressive realization” and the “availability of resources.” The
training of health care workers was important. “Acceptable” as explained
by the Coordinator can remain in this text, and “leading” in relation
to participation of PWD could be replaced with “integral” to address state
concerns. “Prevention is not a human rights issue” and therefore better
placed elsewhere. The wording of UNSR 2- 4 should be cited. Support services
and technical aids merit discussion in a separate article.
WNUSP asserted that the principle of informed consent on the individual
level with respect to each treatment should be included, and this has
been addressed in the BKK draft. PWD are often deprived of autonomy by
the way services are bundled, or when some services are made contingent
on the acceptance of others.
Volume 3, #10
January 16, 2004
Afternoon Session
Commenced: 3:13pm
Recessed: 5:00pm
Reconvened: 5:15pm
Adjourned: 6:15pm
HEALTH AND REHABILITATION
Ireland made detailed remarks that covered some, but not all, of its
concerns of this article, which it emphasized would need to be raised
in the AHC. The delegate proposed to insert the words “without discrimination”
at the end of the first sentence of the chapeau, so that it would read
States Parties “recognize that all PWD have the right to enjoyment of
the highest attainable standard of health without discrimination”. Sub-paragraph
(a) providing PWD with the same range and standard of health and rehabilitation
services as other citizens, and (b) providing disability specific health
and rehabilitation services were collapsed into one. Including “counseling
and support” in (e) among the services that states should provide required
explanation because this was described as “groups.” Language in (f) on
“new knowledge and technologies” was changed so that it no longer implied
that all technologies will benefit PWD. The wording in paragraph (i) should
be changed to account for the fact that the code of ethics for some rehabilitation
services are governed by religious bodies so the role of the government
here should be qualified to ensure that “a code of medical ethics be put
in place which promotes quality care”. Regarding informed consent in (j),
the wording should ensure “that medical information is supplied to PWD
in a manner which enables them to make free and informed decisions.” Regarding
informed consent in (k) a “quick fix” to the disagreements presented there
would be to qualify with the wording “in accordance with national law.”
The sentence would thus read the “ability to refuse treatment and not
comply with forced admission to institutional facilities in accordance
with national law.” The same qualification could be applied to (l) on
the obligation to “prevent unwanted medical and related interventions.”
The issues in (k), on the responsibility of professionals to inform PWD
of their rights, are more appropriate for guiding public policy rather
than as outlined as rights, like a “right to autonomy”. (m) needs to be
reconciled with the views of those delegations that are demanding the
compilation of statistics and data.
Canada suggested several amendments to subaparas (j) and (k) both of
which dealt with privacy and informed consent. Given that there has not
been much time for discussion on informed consent, (j) should constitute
a footnote and (k) should be deleted altogether. Language in (j) on privacy
should be deleted as it is already covered within the article in (m).
Stipulating “a right to be informed of a right to autonomy” might lead
to confusion among those who are required to carry it out. With respect
to (l), Canada reiterated that such a provision, dealing with unwanted
medical interventions imposed on PWD, should be clarified by a footnote
such as the one in the articles on torture and freedom from abuse, which
stipulates that “some members also considered that forced medical intervention
and forced institutionalization should be permitted in accordance with
appropriate legal procedures and safeguards.”
China objected to language contained in a footnote to the Article stipulating
that rehabilitation “does not include medical care.” In China, rehabilitation
involves a medical component. Limiting the terms of rehabilitation, would
hamper the government’s work in providing services to PWD who are in real
need. The delegate further noted that the conception and use of such medical
care is another matter. China concurred that including both paragraphs
(j) and (k) was not necessary. With respect to (e), the wording on protection
against secondary disabilities is problematic, given that secondary disabilities
are only part of the issue. In China over 30,000 children will become
deaf due to misuse of medications. The government is obliged to prevent
such cases. In the context of an international instrument, such as a program
for PWD, governments are asked to take action in order to provide health
care, including preventive measures.
South Africa concurred with Canada’s comments on the redundancy of this
article’s coverage of issues of consent. Subpara (n), which promotes the
involvement of PWD and their organizations in health and rehabilitation
policy and services, should be included in the Draft Convention’s article
on Participation, or in the General Principles which already provides
for the inclusion of PWD as equal citizens and participants in all aspects
of life, as well as respect for difference. South Africa emphasized that
involvement of PWD need not only be related to NGOs, but should also include
government and statuary bodies.
The World Network of Users and Survivors of Psychiatry (WNUSP) pointed
out a contradiction in proposals to qualify subpara (k) so that the ability
of PWD “to refuse treatment and to not comply with forced admission of
institutional facilities” is made “subject to national law.” In fact,
states are expected to conform their national laws to the convention,
rather than the reverse. There is a difference in terms of obligations
to respect privacy in (j) and (m). Item (j) is specifically related to
informed consent, that is, to the person concerned releasing their information.
Item (m) is more general.
The Republic of Korea, noting the general evolution from a medical model
to one based in human rights, expressed concern about the Article as a
whole. Prevention, health and rehabilitation are core aspects of medical
model. The Article on the table suggests that PWD are always sick and
will seek rehabilitation for their whole lives.
Thailand asserted that item (g), addressing the development and training
of health and rehabilitation professionals, should promote the training
of PWD in this profession. In addition, the delegate expressed preference
for the phrasing prevention of the “cost” of disability, rather than prevention
of disability itself. Reference to secondary disabilities should be modified
with the word cost. As per item (g), the Coordinator noted this is covered
in the first part of the sub-paragraph.
Rehabilitation International (RI) urged members to consider two separate
articles--one for health and one for rehabilitation. There is some confusion
around these terms. Footnote 1 on habilitation and rehabilitation might
lead to confusion about these terms as well – these have been distinguished
in papers that can be taken up in the AHC. Advancements in bio-medicine
and genetics are not covered in the relevant text in (f) and language
in this regard will be submitted to the Secretariat. The Coordinator noted
that possibilities to clarify “habilitation and rehabilitation” in this
text would be explored.
The World Blind Union noted that the issue of community-based rehabilitation
(CBR)—crucial in the context of developing countries—was not included
in this Article. In addition, the concept of habilitation was misunderstood
in Footnote 1.
At the end of this session the Coordinator heard comments on the revised
Article on Health and Rehabilitation found in A/AC.265/2004/WG/CRP.4/Add.4.
Ireland pointed out that its now footnoted suggested language adding
“in accordance with national laws” to the end of the subpara on unwanted
interventions was not a formal proposal and could be deleted if the Coordinator
so wished. Canada suggested applying language from footnote 23 of CRP.3
so that it would read “some members considered that medical and related
interventions and corrective surgeries should be permitted in accordance
with appropriate legal procedures and safeguards” Canada requested this
footnote, in order to be consistent, with the way in which this issue
is dealt with in other parts of the rolling text. The Coordinator replied
that footnote 10 would be replaced with language found elsewhere text.
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