For people with intellectual and developmental disabilities.

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Health Care Advocacy

Health Care Advocate

A Health Care Advocate (HCA) is a person who is authorized to make health care decisions on behalf of a person who experiences intellectual or developmental disabilities, if the person does not have a guardian.

The Arc Oregon may serve as an HCA, previously known as a Health Care Representative (HCR), when appointed by a person’s ISP team. This appointment is allowed through Oregon Administrative Rule 411-390 for any adult enrolled in Developmental Disability Services through the state.

Doctor holding a pen and sitting at a desk with stethoscope around her neck and eyeglasses on the table.

FAQs

A Health Care Advocate is a person or agency authorized to make health care decisions on behalf of a person with I/DD who is deemed incapable of making those decisions alone and who does not have an appointed guardian.

In Oregon, an HCA can be appointed for a person with I/DD who is receiving any type of support through the Office of Developmental Disabilities Services, and if a court or the person’s treating physician has determined the person to be incapable of making health care decisions.

A Health Care Advocate has a duty to act consistently with the desires of the person being represented. If the person’s desires are not known, then the HCA must act in good faith and in the best interests of the person.

The HCA may access the person’s health care records and consult with the person’s medical providers for the purpose of making health care decisions on behalf of the person, and must maintain confidentiality of the person’s medical information.

Pursuant to ORS 127.540, an HCA may not make a health care decision on behalf of a person for the following:

  • Convulsive treatment
  • Psychosurgery
  • Sterilization
  • Abortion
  • Withholding or withdrawing a life-sustaining procedure (unless certain conditions are met)
  • Withholding or withdrawing artificially administered nutrition and hydration necessary to sustain life (exception noted in ORS 127.580
  • Requesting medication for the purpose of ending the person’s life
  • Experimental treatment
  • Use of seclusion or physical or chemical restraints unless there is an imminent risk to the person or others
Additionally:
  • Major medical decisions, such as approval for significant medical procedure or treatment, must be approved by a majority of the ISP team.
  • An HCA is appointed for one-year, at the end of which, the appointment must be renewed if support is still needed.

No. Appointing a Health Care Advocate is a viable alternative to the more restrictive guardianship appointment. A person may be capable of making other decisions, but need assistance with health care decisions.

As a legal guardian, The Arc Oregon may be authorized to make health care decisions for a person, but HCA services are also offered separately from guardianship.

A person with I/DD who would like support with important medical decisions may appoint The Arc Oregon as HCA. The ISP team or medical provider supporting a person with I/DD may also determine assistance is needed and request The Arc Oregon’s HCA services.

An application must be completed and submitted for review before we meet with the person. We ask that you contact our office and request an application be sent to you.

Before accepting an appointment as a Health Care Advocate, the GAPS Program Director meets with the person and their support team to assess their needs. If we agree to accept the appointment, we will support the person for 6 months, at which time the appointment may be renewed or discontinued at the request of the represented person, the support team, or The Arc Oregon.

Once appointed as HCA, the frequency of visits with the person and communication with the team is directly dependent on the person’s medical needs. Each person is supported in a way that is specific to their health and level of representation required. When medical decisions are made, the GAPS Advocate will discuss the options and consequences of each one with the person and the team before making a decision. If the person’s condition is complicated and/or the decision relates to surgery or end of life matters, the GAPS Advisory Committee is consulted before a decision is finalized.

At all times, and in all decisions, we consider the values and desires of the person if they are known, as well as what is in their best interest.

HCA services may be discontinued at any time at the request of the person or their support team.

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