Future Reflections Jan/ Feb/March 1985, Vol. 4 No. 1
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(Reprinted from the December, 1983 issue of PCEH Perspectives, a publication of the President's Committee on Employment of the Handicapped.)
Some agreement on treatment of disabled infants:
The controversy over the civil rights of severely disabled infants has not been resolved and painful news stories continue to reveal the torment of disagreement. However, there was a minor celebration last month when a number of concerned groups gathered to sign an agreement. The Principles of Treatment of Disabled Infants is attached for your review. It has been signed by the American Academy of Pediatrics, the National Association of Children's Hospitals and Related Institutions, the Spina Bifida Association of America, the American Association on Mental Deficiency, the Association for the Severely Handicapped, the American Coalition of Citizens with Disabilities, the Down's Syndrome Congress, and the Association for Retarded Citizens. These groups were convened by the Department of Education for a public ceremony signaling their commitment to resolve the controversies surrounding medical treatment for severely disabled infants. The group pledged support to appropriate medical care, the need for more information by medical professionals, parents, and the public, and government and community support for disabled children. "When medical care is clearly beneficial, it should always be provided" and "in cases where it is uncertain whether medical treatment will be beneficial, a person's disability must not be the basis for a decision to withhold treatment" were two major points of the statement. It further noted: "When doubt exists at any time about whether to treat, a presumption always should be in favor of treatment."
Principles of Treatments of Disabled Infants
Discrimination of any type against any individual with a disability/disabilities, regardless of the nature or severity of the disability, is morally and legally indefensible.
Throughout their lives, all disabled individuals have the same rights as other citizens, including access to such major societal activities as health care, education and employment.
These rights for all disabled persons must be recognized at birth.
Need for Information
There is a need for professional education and dissemination of updated information which will improve decision-making about disabled individuals, especially newborns. To this end, it is imperative to educate all persons involved in the decision-making process. Parents should be given information on available resources to assist in the care of their disabled infant. Society should be informed about the value and worth of disabled persons. Professional organizations, advocacy groups, the government and individual care givers should educate and inform the general public on the care, need, value and worth of disabled infants.
When medical care is clearly beneficial, it should always be provided. When appropriate medical care is not available, arrangements should be made to transfer the infant to an appropriate medical facility. Consideration such as anticipated or actual limited potential of an individual and present or future lack of available community resources are irrelevant and must not determine the decisions concerning medical care. The individual's medical condition should be the sole focus of the decision. These are very strict standards.
It is ethically and legally justified to withhold medical or surgical procedures which are clearly futile and will only prolong the act of dying. However, supportive care should be provided, including sustenance as medically indicated and relief of pain and suffering. The needs of the dying person should be respected. The family also should be supported in its grieving.
In cases where it is uncertain whether medical treatment will be beneficial, a person's disability must not be the basis for a decision to withhold treatment. At all times during the process when decisions are being made about the benefit or futility of medical treatment, the person should be cared for in the medically most appropriate ways. When doubt exists at any time about whether to treat, a presumption always should be in favor of treatment.
Government and Community Support
Once a decision to treat an infant has been made, government and private agencies must be prepared to allocate adequate resources for appropriate services as needed to child and family for as long as needed. Services should be individualized, community-based and coordinated.
The Federal Government has an historic and legitimate role in protecting the rights of its citizens. Among these rights is the enforcement of all applicable federal statutes established to prevent and remedy discrimination against individuals with disabilities, including those afforded by Section 504 of the Rehabilitation Act. States also have legitimate roles in protecting the rights of their citizens and an obligation to enforce all applicable state laws.
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