AAIDD POSITION STATEMENTS

AAIDD/ARC Position Statements

HEALTH CARE

POLICY STATEMENT

People with mental retardation and related developmental disabilities must have dependable, high quality health care in the community and affordable, comprehensive health insurance.

ISSUE

Too many of our constituents have faced numerous challenges, including life-threatening barriers, in accessing timely and appropriate health care. Problems in the community include inability to obtain appropriate quality services, lack of access to specialists, and healthcare professionals who refuse to serve or limit the options made available to this population. Many communities in fact lack health professionals overall but especially those trained to meet the needs of our constituents. To add to the problem, health insurance coverage is frequently unavailable or prohibitively expensive.

POSITION

Our constituents must have universal access to appropriate, affordable, accessible, timely, and comprehensive medical and dental treatment throughout their lives.

Disability must not be a factor in the decision to provide, delay, or withhold treatments or to provide or receive organ transplants. The person's medical condition and welfare must be the basis for the decision.
Reasonable accommodations must be available for those who do not have the capacity to make health care decisions.
Health Professionals must receive specialized training to assure maximum health and to prevent secondary conditions among our constituents. Furthermore, the overall shortage of nurses and other trained professionals must be addressed.
Reimbursement rates for health care professionals must reflect the fact that many people with disabilities have greater health care needs and thus require more time with a health care provider. Reimbursement rates must not provide a disincentive for healthcare professionals to provide services.
Treatment must be high quality and:
- Based on a broad definition of medical necessity. This must include not only overcoming or preventing illness but also maintaining or preventing additional deterioration of existing functioning.
- Not denied on the basis of mental retardation.
- Given only with the informed consent of the individual or the surrogate decision-maker and include the use of advance directives when applicable.

Health care reform must be based on the following principles:

Non-discriminatory: Prohibits denials for pre-existing conditions or mental retardation; prohibits practices which set higher premiums solely because of the existence of a disability; and provides timely access despite disability, age, race, location, income, health status, or change in address.
Comprehensive: Ensures a wide array of services including active and preventive medical care, mental health care, rehabilitation, personal assistance, and support.
Appropriate: Ensures services based on individual need, preference, and choice.
Equitable: Ensures that people with disabilities will not bear a disproportionate share of the costs.
Efficient: Maximizes quality care and minimizes administrative costs.

Other considerations include:

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 directive such as a "Living Will," or a health care power of attorney, a surrogate decision-maker should be appointed to make these decision before a crisis arises. 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 Healthcare 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 mental retardation 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. These are appropriate whenever informed consent is assured and should be available and honored for individuals with mental retardation.

Adopted: The Arc, Congress of Delegates, November 9, 2002
AAIDD Board of Directors, May 28, 2002