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Intellectual/Developmental Disabilities

Special Considerations

As with the general population, it is important to Initiate the advance care planning process for all people with intellectual/developmental disabilities (ID/DD) 18 years of age or older.

The first step is to determine the capacity or ability of the person with DD/ID to choose who they trust to make health care decisions.  If the person has the capacity to choose a health care agent, encourage the individual to complete a health care proxy using the same Five Easy Steps.

If the person with DD/ID does not have the capacity to choose a health care agent, consider initiating guardianship, with the authority to make medical decisions, including decisions regarding life-sustaining treatment.

Family members and staff serving those with ID/DD should also engage in advance care planning.

Frequently Asked Questions

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Is the individual with Intellectual/Developmental Disabilities (ID/DD) able to choose a Health Care Agent?

Before an individual with ID/DD can appoint a health care agent, it must be determined that he or she is able to choose an agent. The ability to choose a health care agent is referred to as capacity determination and means:

  • A person understands that he/she is giving authority to another person to make health care decisions.
  • Every adult is presumed capable of choosing his/her agent unless a guardian has been appointed, or there has been a court determination that the individual is not capable of appointing a health care agent.

If a person with ID/DD is able to appoint a health care agent and complete a health care proxy, who can witness the signing of the document?

The individual must sign and date the proxy in the presence of two adult witnesses.

  • One witness cannot be affiliated with the residential facility
  • One witness must be a licensed physician or clinical psychologist
    • employed by a developmental center or DDSO for at least 1 year
    • employed for 2 years to render care at a facility for individuals with ID/DD
    • with specialized training in ID/DD and 2 years experiencing treating ID/DD persons
    • with three years of experience treating persons with ID/DD
  • The witnesses must verify that the individual is executing the proxy willingly
  • The person appointed as agent cannot act as a witness

Who can be a health care agent?

Any adult who knows the person with ID/DD well and is willing to make health care decisions, except for individuals affiliated with the residential agency or facility, unless the individual is related by blood or marriage. Those excluded include a governing body member or CEO, employee or physician of residential agency/facility.

Can the individual include their wishes for treatment on a health care proxy?

Yes. Wishes for treatment may be included on the health care proxy. This includes providing, withholding or withdrawing life sustaining treatment, such as cardiopulmonary resuscitation, intubation and mechanical ventilation, artificial hydration and nutrition, blood transfusions, pain medication, chemotherapy and antibiotics.

If instructions pertaining to artificial hydration and nutrition are not included, and the agent does not know the individual’s wishes – the agent does not have the authority to withhold/withdraw artificial hydration and nutrition.

Because it is difficult to predict the future, it is more important to document personal values, beliefs and goals for care.

What triggers a health care agent’s decision-making authority?

A health care agent does not have authority to make health care decisions until the individual with ID/DD has been determined to lack capacity to make such decisions.

Who makes the determination that an individual lacks the capacity to make a health care decision?

A licensed physician or clinical psychologist:

  • employed by a developmental center or DDSO for at least 1 year
  • employed for 2 years to render care at a facility for individuals with ID/DD
  • with specialized training in ID/DD and 2 years experiencing treating ID/DD persons
  • with three years of experience treating persons with ID/DD

Who must be notified once a determination of the incapacity or the inability to make medical decisions has been made?

The individual, the health care agent, the CEO of the residential facility, and the guardian (if one exists) must be notified of a determination of the incapacity or the inability to make medical decisions.

Can the individual who created a health care proxy object to a capacity determination that they lack the ability to make medical decisions?

Yes. The individual can object to an incapacity determination and the objection prevails. The individual can also object to a health care decision made by a health care agent and the objection prevails.

In order to overcome the objection, a court must determine that the individual lacks capacity to make a health care decision.

What is capacity to make a health care decision?

Capacity to make a health care decision is the ability to adequately understand and appreciate the nature and consequences of proposed professional medical treatment.

If the health care agent is making an end-of-life decision, which MOLST checklist should be used?

The NYSDOH MOLST checklist #2 applies to “Adult Patients Without Medical Decision- Making Capacity who Have a Health Care Proxy” and can be used in any setting. The NYSDOH MOLST Checklist #2 is the appropriate checklist to accompany the MOLST form.

Adapted from MHLS Health Care Proxy FAQs, Lisa Volpe, Esq., Deputy Chief Attorney of MHLS, 2nd Judicial Department

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