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HEALTH ETHICS TODAY
Volume
12, Number 1, Fall/November 2001
Disability
and the Allocation of Health Care Resources:
The Case of Connor Auton
Peter
Carver, BA, MA, LLB, LLM
Assistant Professor, Faculty of Law
University of Alberta
This article represents a modest attempt to answer the question, "What
contribution might a disability rights perspective make to the field
of bioethics?" Rather than attempt to address this question
in general fashion, it seemed preferable to look at an example of
how such a perspective may cast light on an issue of interest to
bioethicists. The issue is that of the allocation of health care
resources. The example is based on a recent court decision, Auton
v. B.C. (Minister of Health).1 The use of an example
drawn from law, while admittedly serving interests of personal comfort,
is not coincidental.
The phrase "disability rights perspective" refers to the
general theoretical approach which has motivated disabled activists
over the past 20 years or so, in Canada and around the world. A more
familiar phrase, perhaps, is the "social model of disability." The
social model is often defined in contrast to the so-called "medical
model". The latter is said to identify disability in terms of
physiological or neurological impairments, to ascribe to those impairments
an air of tragedy, and to locate the response to the tragic problem
of disability in medical treatment of impairment. This characterization
may seem unfair in some respects, but much of the analysis is developed
from personal experience. By contrast, adherents of the social model
view the biological impairments of disability as no more significant,
indeed less significant, than discriminatory social structures and
attitudes. The problem of disability is not tragedy, but the social
consequences of discrimination: poverty, powerlessness, and the exclusion
from mainstream activities resulting from failure to accept and accommodate
the differences expressed by disability. Thus, the principal theoretical
contribution of the social model of disability to bioethics, as to
other fields, is its reconfiguring disability as first and foremost
a human rights (i.e. anti-discrimination) issue. Or, in other words,
a legal issue, whereby persons with disabilities are claimants of
rights, not merely recipients of services, including medical services.
In Canada, the disability rights perspective has achieved remarkable
success at the level of law and jurisprudential theory. The signal
achievement was the inclusion of protection from discrimination on
grounds of mental or physical disability in section 15 of the Canadian
Charter of Rights and Freedoms2 , and in the human rights
laws of every province and at the federal level. Moreover, the Supreme
Court of Canada has been increasingly clear in adopting the social
model of disability as the core interpretive principle of these equality
rights protections. Most recently, the Court stated:
The true focus of the s. 15(1) disability analysis is not on the
impairment as such, nor even any associated functional limitations,
but is on the problematic response of the state to either or both
of these circumstances. It is the state action that stigmatizes the
impairment, or which attributes false or exaggerated significance
to the functional limitations (if any) ... that creates the legally
relevant human rights dimension to what might otherwise be a straightforward
biomedical condition.3
But what does discrimination on grounds of disability mean with
respect to medical treatment or health care? In particular, does
a claim of disability discrimination going to the failure of a province's
medicare program to provide treatment for a disabling condition pose
a challenge to the social model of disability? These questions are
inspired by the decision in Auton.
Connor Auton is a child with autism living in British Columbia.
His parents, and several other parents of children with autism, concluded
by the mid-1990s that Lovaas Autism Treatment, a form of intensive
behaviour intervention ("IBI") therapy named for its founder,
Dr. Ivan Lovaas of California, constituted an effective therapy for
the developmental impairments which characterize autism. The Lovaas
program involves one-on-one behavioural therapy for up to 40 hours
a week for pre-school age children. It can cost as much as $60,000
per child per year. The parents' group pressed B.C. government officials
to have IBI recognized as a "medically necessary service",
and covered under the province's medical insurance plan. When the
government refused in mid-1998 to do so, the parents launched legal
action, alleging that the refusal constituted a breach of section
15 of the Charter because it discriminated against their children
on the prohibited grounds of disability. In July 2000, Madam Justice
Allan of the B.C. Supreme Court found in favour of the parents, and
subsequently ordered the provincial government to fund IBI therapy
for children with autism.
A similar claim was made in Cameron v. Attorney General of Nova
Scotia.4 In that case, an infertile couple argued that
the denial of medicare coverage for IVF treatment constituted discrimination
on the basis of disability, i.e., infertility. The Nova Scotia Court
of Appeal agreed, but went on to rule that in the circumstances,
including cost and availability of other insured fertility services,
the government's decision represented a limit on the couple's equality
rights "demonstrably justified in a free and democratic society",
pursuant to section 1 of the Charter.
These claims may at first appear to be the very embodiment of a
disability rights perspective. Certainly, the Auton case shows the
potential of a human rights position for strengthening the hand of
parents' pursuing increased services for their disabled children.
However, the discrimination claim in Auton is different from what
might be thought the paradigmatic claim advanced by the social model.
The essence of the latter is that persons with disabilities should
not be denied the same nature and quality of health services that
non-disabled persons receive. Two examples come to mind, both, oddly
enough, originating in B.C. The first is represented by the Stephen
Dawson litigation in 1983.5 The Dawson case involved the
question of whether a duty exists in law to provide life-saving surgery
for a severely disabled child, against parental wishes. The disability
rights perspective would maintain that it is discriminatory to limit
access to medical procedures on the basis of assumptions made about
a person's quality of life. The Court in Dawson reached a similar
conclusion.
The second kind of claim is one in which access to medical service
is compromised by a disability-related barrier. This was the nature
of the claim in Eldridge v. Attorney General of B.C. 6 ,
the leading Canadian decision to date on section 15 and disability.
In Eldridge, three deaf plaintiffs, including a married couple who
attended a hospital for the premature birth of their baby, argued
that they had been denied equal access to public medical service
because they were not provided, as part of that service, with sign
language interpretation. The Supreme Court of Canada agreed. The
government's failure to accommodate the plaintiffs' communications
impairment constituted discrimination on the basis of disability.
In each of these two instances, the problem to be remedied was located
in the social response to disability: in Dawson, in discriminatory
attitudes that would deny care otherwise extended to infants whose
quality of life was deemed acceptable; in Eldridge, in the failure
to design the delivery of health care so as to ensure its full availability
to deaf persons. In neither case was the impugned discrimination
a matter of failing to treat the disability.
The latter is, however, the nature of the claim in Auton. There,
section 15 is invoked to challenge a government refusal to provide
a therapy which would ameliorate (not cure, it was agreed) the disabling
condition.
Does this matter? It appears to matter with regard to the discourse
in which the claim of discrimination is framed. Consider certain
of the statements Justice Allan made in the course of reaching her
conclusion. She noted the seriousness of autism as a disabling condition.
Unless successfully treated, "almost all autistic children are
doomed to a life of physical, emotional, social and intellectual
isolation and eventual institutionalization - a tragic outcome for
the children, their families, and society" (para 4). Nothing
other than effective medical treatment will allow this tragic outcome
to be avoided: "Only effective treatment can reduce the marginalization
of autistic children and their exclusion from the mainstream of society." To
the argument that this case, like Eldridge, could be viewed as dealing
with the government's failure to accommodate a communication-based
disability so as to facilitate equal access to other publicly provided
opportunities, she responded:
While one of the effects of autism may be an inability to communicate
and obtain government services which are universally available, the
gravamen [essential feature] of the government's omission is its
failure to provide treatment for the underlying disability, not its
willingness to ensure access to other benefits. (para 135) (emphasis
added)
This language displaces a concern with the social dimension of disability
with its biological identity. The "problem" is the disability
and its consequences for the individual's life prospects. A course
of therapy provides a partial "solution." Discrimination
lies in the withholding of public funds to make the solution available.
This analysis poses a challenge to the social model of disability
because it grounds discrimination in a medical response to disability.
As noted, the Supreme Court of Canada has made stigma or stereotyping
a key concept in its approach to discrimination law. This reinforces
the idea that discrimination is social in nature. Justice Allan did
find a stigmatizing of autism in the B.C. government's decision-making:
The absence of treatment programs for autistic children must consciously
or unconsciously be based on the premise that one cannot effectively
treat autistic children. The extensive evidence in this case shows
that assumption to be a misconceived stereotype. (para127)
In other words, the failure of the B.C. government to fund any treatment
program for children with autism reflects a view that they are less
worthy of respect. This is a plausible response to the concern raised
above. Nevertheless, the discussion of stigma remains problematic.
It goes more to the treatability of the impairment, than to the acceptance
by society of the person with the disability. In Cameron, this is
even clearer. The Nova Scotia Court of Appeal found that the infertile
have been subject of social stigma, which they have internalized:
...the material shows that in various cultures and at various times,
infertility- particularly in the female- has been regarded as a disadvantage-
an unworthy state, the object of derision, banishment and disgrace....
The literature includes studies that show, as one would expect, that
infertile persons perceive themselves in a negative light. (para
183)
The perceived remedy for this stigma is government funding for medical
treatment to remove the problem of infertility, the 'source' of the
stigma. "It is the levelling of the playing field that section
15(1) is all about" the Court said (para 168). However, the
field is being levelled by medicine, not by changing social attitudes,
to which the Court appears to attribute a degree of inevitability.
Conclusion
The relationship between the social model of disability
and health care is ambiguous. The litigation discussed in this
brief comment reveals one instance
in which this ambiguity manifests itself. A major contribution of the social
model of disability is to stress the human rights dimension of the allocation
of public goods and opportunities. Recognizing quality health care as a
public good of great value in Canada, social model theory would insist
that it be
distributed fairly and without discrimination based on disability. With
a claim of discrimination going to the availability of treatment
for disability,
however, things get more complicated. The purported value of the therapy
takes centre stage. Medicine's proper concern with alleviating the impairments
of disability (also the concern, of course, of families of children with
disabilities) seems to overtake what the social model views as the proper
concern of human rights law- respect for the equal worth of the person
with a disability. A challenge lies ahead in identifying the grounds
on which
these approaches may be reconciled.
References
1. [2000] BCJ No. 1547 (July
26,2000). The remedy part of the case gave rise to a further decision
and reasons, at [2001] BCJ No. 215 (February 6, 2001).
The case is currently on appeal to the B.C. Court of Appeal.
2. Section 15(1) reads:
Every individual is equal before and under the law and has the right to equal
protection and equal benefit of the law without discrimination and, in particular,
without discrimination based on race, national or ethnic origin, colour,
religion, sex, age or mental or physical disability.
3. Granovsky v. Canada (Minister of Employment and Immigration)
[2000] SCJ No. 29, para 26, per Justice Binnie.
4. [1999] NSJ No. 297 (September 14, 1999).
5. In The Matter Of Stephen Dawson [1983] B.C.J. No. 38 (B.C. Supreme
Court, March 18, 1983). This case took place before section 15 of
the Charter came into effect, and so was argued and decided largely
on common law principles.
6. [1997] 3 SCR 241.
Contents
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