When I worked in disability services, we had several people in our residential programs who lacked capacity to make informed decisions and who had no one in their lives legally authorized to make decisions on their behalf. Usually, when these folks face non-emergency invasive medical treatment or end-of-life decisions, the only recourse for their care-givers is to petition the court for consent. However, in New York State (NYS) we have a Surrogate Decision Making Committee (SDMC) which is the only program of its kind in the nation.

The SDMC consists of specially training volunteers who review the person’s capacity, his or her medical situation, and return a decision in a hearing-like setting. In order to qualify for this free program, the person needs to have resided or be currently residing in a residential program operated by the Office for People with Developmental Disabilities (OPWDD), the Office of Mental Health, or Office of Alcoholism and Substance Abuse Services, or be receiving other supportive services through OPWDD. When a panel is convened to review a case, it consists of: a NYS-licensed health care professional, a NYS attorney, a family member or former client, and an advocate for persons with mental disabilities. After reviewing the case, the panel decides:

  1. The person’s ability to consent to or refuse the proposed medical treatment, or end-of-life decisions
  2. If there is an authorized surrogate who can make decisions on the person’s behalf
  3. If the medical treatment is in the best interest of the person (Justice Center, n.d.)

In order to have SDMC consider a case, a person (called a declarant) must submit a request in writing on special case filing forms. The declarant can be an agency director or staff person at the residential program, the person’s doctor, hospital staff, the person’s service coordinator, or family member. The declarant acts as the panel’s contact person, ensures that all involved parties attend the hearing, and speaks to why the person is unable to consent and why the proposed medical treatment is in the best interest of the person. In order to effectively demonstrate that the treatment is in the best interest of the person, the case must contain: the most recent annual physical, consults pertaining to the diagnosis or procedure under review, and any supporting labs, x-rays, nursing notes, intake forms, etc. The disabled person must attend the hearing, if unable to do so, a panelist will visit the person prior to the hearing. Staff who are familiar with the person’s functioning, family history, and medical condition should attend the hearing to answer the panelists’ questions. In most cases, a decision is made within 14 days of the case being received (Justice Center, n.d.).

In order to become a volunteer, one must complete an application, complete a 1-day training, and take an oath of office. Volunteers serve for 2-year terms and may be reappointed for an additional 2 years. The panel makes decisions on:

  • Use of general anesthesia
  • Invasive procedures which may result in significant pain, discomfort, debilitation, or long recovery time
  • HIV testing
  • Chemotherapy
  • Hospice
  • Withdrawal or withholding life sustaining treatment as stipulated in the Health Care Decisions Act for persons with developmental disabilities

The panel is excluded by law from making decisions on:

  • Routine diagnosis and treatments
  • Dental procedures performed under local anesthesia
  • Emergency treatment
  • Electroconvulsive therapy
  • Sterilization
  • Termination of pregnancy
  • Withdrawal or discontinuation of life sustaining treatment except as provided for in the Health Care Decisions Act

The panel makes their decisions as a group, and when a panel is convened it must consist of at least three and no more than four panelists. In most cases, a decision is made within 14 days of the case being received (Justice Center, n.d.).

Justice Center for the Protection of People with Special Needs. (n.d.) Surrogate Decision Making Committee. Retrieved from https://www.justicecenter.ny.gov/services-supports/sdmc