People with intellectual and developmental disabilities (IDD) are first and foremost human beings and are entitled to all the fundamental rights, both explicit and implied, that are guaranteed for all people under federal and state laws.
All persons with IDD are valuable and deserve respect consistent with human dignity throughout their lives. The value of a person’s life is not related to the type, degree, or severity of disability.
As the nation, individual states, and various interest groups consider the adoption of medical aid in dying (MAID) policies, it is essential that people with IDD have their rights and interests protected. Historical ignorance, prejudice, and discrimination against people with ID continue. Education of policy makers and society at large is critical.
It is The Arc New York’s position that:
With specific protections in place for the sake of the person and people around them, mentally competent adults capable of making decisions for themselves who are dying of a terminal illness (typically 6 months or less to live) should have a responsible pathway with appropriate guardrails.
- Additional protections must be in place beyond requiring two physicians of any scope of practice to sign off. Specifically, a psychological evaluation by a licensed Doctor of Psychology must be mandated and not merely recommended. For people with IDD, these physicians must have expertise in the field of intellectual and developmental disabilities.
- Prior to providing a prescription medication, physicians must be required to confirm that terminally ill, mentally competent adults are fully informed about all end-of-life options, including comfort care, hospice care, palliative care pain control, and medical aid in dying.
- A waiting period must be in place for thoughtful consideration prior to prescribing end-of-life drugs.
- Prior to providing a prescription medication, physicians must explore/address any needed disability supports and services for the person.
- Prescribed end-of-life drugs must be tracked appropriately to ensure that only the patient prescribed the drugs has access. This is to ensure that, should the patient die of natural causes due to their illness, or choose not to self-administer said prescribed drugs, that others do not have access to end-of-life drugs not prescribed to them.
- People seeking MAID must be evaluated in person by the aforementioned qualified physicians and with the appropriate waiting periods.
- No law should include chronic, but not terminal illness. This definition could include people suffering from dementia, depression, anxiety and other mental illnesses.
- The wishes of mentally competent adults who have clearly and competently expressed them should be honored, provided that the aforementioned guardrails and safeguards have been followed and recorded accordingly.
- The personal autonomy, liberty, freedom, and dignity of each person with intellectual and developmental disabilities must be respected and supported.
