A family-based organization for people with intellectual and developmental disabilities

Advocacy at the End of Life

All persons with intellectual and other developmental disabilities are valuable and deserve respect consistent with human dignity throughout their life. The value of a person’s life is not related to the type, degree, or severity of disability. Attitudes related to care at the end of life may vary based on clinical experience, medical practice, religious beliefs and an understanding of the legal rights of individuals with intellectual and other developmental disabilities.

It is The Arc New York’s position that:

  • All Chapters providing services must be knowledgeable and well-versed of all laws, regulations, statutes and policies that apply to end-of-life decisions. 
  • The end of life is defined as the last year of life, consistent with the current standard in the public health law. Individuals may be considered to be at the end of life when:
  • they have a terminal condition that is progressive, irreversible, or incurable such as late-stage Alzheimer disease or terminal cancer,
  • expected to cause death in less than one year or
  • they are permanently unconscious; and
  • treatment would impose an extraordinary burden, other than intellectual or developmental disability. 
  • Individuals are not at the end of life when they are living in a stable condition that requires significant life-sustaining treatment (such as a mechanical ventilator or a feeding tube) and wish to continue receiving such treatment. 
  • Discussions about care at the end of life should occur, if possible, prior to being at the end stage of life. These discussions should include statements about what care the person would like to receive if he or she were in one of the end of life conditions described above. Those who are closest to the person (ordinarily the family, legal guardian, trusted caregivers, nurses, friends, and others) are best able to identify the person’s preferences when the person is unable to express them directly. 
  • Legal or other professional assistance should be used to develop living wills, health care proxies, and other such statements about personal preferences. These statements should be updated periodically taking into account the individual’s wishes, medical advances, technological improvements, and changing perspectives during one’s lifespan. 
  • Withdrawing or withholding care may be appropriate in some situations, consistent with legal authority granted by New York State, but should not itself imply lack of respect for the importance of that person’s life. Withholding or withdrawal of life-sustaining treatment (including nutrition and hydration should be consistent with the current public health law noted above. 
  • The principles of informed consent, as contained in statute, require that decision-makers have:
  1. the legal authority to provide consent if the person does not have the capacity to provide consent,
  2. all of the information needed to make a decision;
  3. the ability to assess the information adequately; and
  4. freedom from undue influence by others. Guardians and healthcare proxy representatives must always seek to determine the uncoerced, authentic voice of the person with an intellectual or other developmental disability, and failing that, what is in the person’s best interest, and provide all of the information the person needs to express his or her preferences.
  • Instructional strategies and training materials should be developed that will assist individuals with intellectual and other developmental disabilities to access relevant information, analyze it effectively, and utilize it to assess options and make choices. 
  • Religion and spirituality of the person are important and must be respected. Their religious or spiritual preferences should be made identified or articulated by the individual or his or her loved ones. Spiritual or pastoral care should be provided when it is desired. 
  • Needed treatment should be available in the most appropriate context, taking into account the person’s preferences and health care needs. People should not be required to live in a nursing home in order to receive care that could be provided in a more natural setting such as the person’s home. Needed treatment includes (but is not limited to) provision of home health care, nursing, medications, nutrition, hydration, and social interaction. 
  • Hospice care at the end of life shall be available when it is appropriate. Adequate pain relief is essential to alleviate and prevent suffering at the end of life. 
  • The wishes of persons who have clearly and competently expressed them should be honored by caregivers and health care providers. 
  • Persons who are “permanently unconscious” should only have treatment withheld or withdrawn in the event that such treatment is found, under the standards and processes of the surrogates’s court procedures act, to be an “extraordinary burden on such persons, in light of” the person’s condition and the expected outcome of the treatment, both exclusive of such person’s intellectual or developmental disability. 
  • The legally determined surrogate (parent, spouse, etc.) or court-appointed guardian is authorized to make treatment decisions when the person is not able to make these decisions directly in accordance with the Health Care Decisions Act for Persons with Mental Retardation and the Family Health Care Decisions Act. 
  • Prompt hospital ethics committee and/or judicial review is appropriate and necessary when application of this policy is unclear or in dispute among health care providers, family members, guardians, friends and other significant caregivers. All other avenues such as the use of internal Ethics Committee, Guardianship Committee or Surrogate Decision-Making Committee should be exhausted.



Adopted October 21, 2011 at the NYSARC, Inc. Delegate Assembly        
Adopted with Amendments October 19, 2012 at NYSARC, Inc. Delegate Assembly
Adopted with Amendments October 22, 2016 at NYSARC, Inc. Delegate Assembly