MEDICAL AND DENTAL TREATMENT
ISSUE
People with intellectual and other developmental disabilities have frequently been denied
access to appropriate medical and dental treatment due to their disability.
There are health care professionals who refuse to serve individuals with
intellectual and other developmental disabilities. Examples include withholding life-saving surgery, denying organ
transplants and refusing to treat burn victims.
People with intellectual and other developmental
disabilities sometimes die because
doctors, parents and other decision-makers impose do-not-resuscitate orders or
refuse to authorize medical treatment or provide food and/or water. These
decisions are often based on the disability itself, on the perceived "poor
quality of life" of the individual or for economic reasons, rather than on
the individual's medical condition.
There is often a reluctance to provide medical and dental
treatment due to a lack of knowledge and understanding of best practices in
treating people with intellectual and other developmental disabilities. Providing medical and dental treatment
is further complicated by inadequate, uneven and arbitrary rates of
reimbursement through Medicaid and private insurance companies.
POSITION
The Arc believes that:
Right to Medical and Dental Treatment
- All people with intellectual and other developmental
disabilities, regardless of the
degree of their disability, have a right to appropriate, affordable and
accessible medical and dental treatment throughout their lives as part of a
nationwide, universal health care system.
- A person's intellectual or other developmental
disabilities or degree of disability
must not be a factor in the decision to provide or withhold medical or
dental treatment. Withholding or withdrawing treatment based on disability
alone is illegal and can never be condoned. The individual's medical
condition and welfare must be the basis of the decision.
- Any treatment must:
- be of high quality and consistent with the
individual’s medical diagnosis;
- preserve or improve the individual's health; and
- be given only with the informed consent1
of the individual or his/her surrogate decision-maker.2
Informed Consent
- The decision to accept or refuse treatment requires
informed consent. Informed consent requires that the individual
decision-maker or surrogate decision-maker:
- have the legal capacity to give consent;
- be given enough information to understand the
benefits and risks of the proposed treatment;
- be offered the opportunity to ask questions and
receive answers understandable to that person;
- not be forced to accept a particular treatment
through deceit or threat.
Surrogate Decision Making
If an individual is unable to make his/her own medical
decisions and does not have an advance directive3 such as a
"Living Will," or a health care power of attorney, a surrogate
decision-maker should be appointed to make these decisions in advance of a
crisis situation. People who have such authority under state laws include
the parent of a minor child, the guardian/conservator of an incapacitated
adult, or surrogate decision-makers designated under a health care consent
law.
All decision-making by a surrogate decision-maker
should be consistent with the principles expressed in the sections above
regarding Right to Medical and Dental Treatment and Informed Consent and
must always be consistent with the best interests of the individual. In
addition, in decisions involving the refusal of medical treatments, or
nutrition and hydration when such refusal will result in the death of the
individual, the legal authority of the surrogate decision-maker should be
limited. Specifically, that authority should be confined to those situations
in which the person’s condition is terminal, death is imminent, and any
continuation or provision of treatment, nutrition and/or hydration would
only serve to prolong dying. However in such situations, people with
intellectual and other developmental disabilities must be provided aggressive medical treatment to relieve pain;
sustenance as medically indicated; and care designed to relieve isolation,
fear and physical discomfort.
Advance directives are appropriate whenever informed
consent is assured and should be available and honored for individuals with
intellectual and other developmental disabilities .
Public Policy
Until there is universal health care nationwide, public
policy must ensure that medical and health insurance coverage is equal in
every respect to that afforded to the general population and evenly applied
to provide health care for people with intellectual and other developmental
disabilities and their
families.
Medical Education
Medical and dental schools must provide curricula and
experiences on best practices in treating people with intellectual and other
developmental disabilities and
their families.
1Informed
consent: Voluntary, uncoerced agreement to
accept a health care treatment. (Midwest Bioethics Center & University of
Missouri-Kansas City, Institute for Human Development, Bioethics Forum, Fall
1996)
2Surrogate decision-maker: A person who makes health care
decisions for a patient who cannot make his or her own decisions. (Midwest
Bioethics Center & University of Missouri-Kansas City, Institute for Human
Development, Bioethics Forum, Fall 1996)
3Advance Directive: An individual’s written or oral
preferences regarding life-sustaining medical treatment decisions. (Ethics
Manual, American College of Physicians, 1998)
Adopted by Delegate Body, Oct. 1998.
Replaces position adopted 1992. One of a series of position statements
reflecting The Arc’s vision on issues affecting people with intellectual and
other developmental disabilities
and their families.
The Arc of the United States
1010 Wayne Ave., Suite 650
Silver Spring, MD 20910
Phone: 301-565-3842
Fax: 301-565-5342
Email: Info@thearc.org
