Health Professionals Gain Insight on Advanced Care Planning for Persons with Developmental Disabilities

Posted · Add Comment

It’s becoming more common for healthcare clinicians to ask patients about their Advanced Care Planning decisions. For some, this means determining if a Health Care Proxy has been established. For others it might mean making sure that a MOLST (Medical Orders for Life Sustaining Treatment) form has been filled out either on paper or electronically. These decisions are helpful when made ahead of time so that the person’s wishes are always honored if they are ever in a medical situation in which they are unable to advocate for themselves.

The same decisions are equally important to review with those who have developmental disabilities. To ensure that they receive the same opportunity for advanced care planning, specific protocol has been put into place along with support systems to help assist in the process.

55 healthcare clinicians from more than 20 organizations attended a full-day workshop to gain insight on this topic. UHS and Care Compass Network co-hosted the event and introduced the attendees to a variety of experts who shared information related to their specific area of focus.

One of the speakers was Laura Bevacqua, Principle Attorney with Mental Hygiene Legal Service. Bevacqua explained that her organization provides legal assistance to people in 28 counties which covers approximately 50% of New York State. The agency provides direct advocacy for individuals who receive services from the Office of Mental Health (OMH), the Office for people with Developmental Disabilities (OPWDD) and the Office of Alcoholism and Substance Abuse Services (OASAS). Bevacqua’s colleagues support individuals by talking with them and explaining their rights. They also assist with safe discharge plans as well as review legally authorized surrogates’ decision to withhold or withdraw life sustaining treatment from a person with developmental disabilities.

Bevacqua explained that under the Health Care Decisions Act, these individuals are protected. This is significant because at times healthcare professionals do not honor the wishes of a developmentally disabled individual even when their legal guardian is present. In absence of a completed Health Care Proxy, the agency may be notified to help determine the appropriate next steps for them. The presentation concurred with sentiments expressed earlier in the day in reference to the importance of the MOLST form. In the case of someone with developmental disabilities, a three page checklist must also be completed. This checklist is essential when a physician or licensed psychologist has determined that the individual does not have capacity to make decisions for themselves.

Sally Colletti is the mother of an adult son with autism. She is also his guardian and healthcare proxy. She attended the event as both a member of the Care Compass Network team as well as the owner of an organization that advocates for autistic individuals and their families. Through Advocates for Autism, Colletti has dedicated 20 years providing person-centered planning for individuals and their families.

“I want to be sure that I am always my son’s most current voice, particularly when it comes to life changing treatments and medical decisions”, Colletti shared. She attended the event looking to gain more insight on the legal aspects of palliative and hospice care for those who cannot make decisions for themselves.

“At the end of life or in a time of crisis or trauma, the family is looking for the medical provider to have the answers and not have to educate them on the patient and family’s legal rights”, she explained. “To have providers who truly understand the law makes all the difference in the world”.

After a brief break, event host Kris Marks, Administrative Director of Palliative Care at UHS, introduced Laura Monthie from the Justice Center for the Protection of People with Special Needs (Justice Center). Monthie focused her talk on the role of the Surrogate Decision Making Committee (SDMC) and Informed Consent.

The SDMC works on behalf of developmentally disabled individuals who do not have the capacity to make decisions for themselves nor do they have a legal guardian or health care proxy designated to make decisions on their behalf. The SDMC has six regional offices across New York State and was created to act in place of the court system. When formed, state-wide public hearings were being held when individuals did not have decision makers designated. Over time people became dissatisfied that very personal, quality of life decisions were being determined through a court process.

Monthie explained that anyone who formerly or currently receives services from OPWDD, OMH or OASAS is eligible for SDMC. They must also be deemed as lacking the ability to consent or refuse treatment on their own. Additionally, they are in need of SDMC because they do not have a legally authorized surrogate.

When it comes to end of life health care decisions, the SDMC is critical for persons with intellectual (ID) or developmental disabilities (DD). In these cases, the individual does not necessarily need to be a past or current recipient of services provided by the organizations mentioned previously. When acting on behalf of the individual, the SDMC has a very precise process that involved filling out a series of forms. Once the forms are complete, sent to SDMC and the case is processed, it is sent to a regional coordinator to schedule the hearing. After the hearing, a decision is issued. Monthie walked the participants through each of the required forms.

In the case of a Major Medical hearing, the individual is always present and the hearing is held in a location that is most convenient for them. Sometimes this will take place in their home but often in a hospital where the care or procedure will take place. The objective of this process is to determine what is in their best interest and what outcome will relieve suffering, preserve or restore functionality and ultimately improve their quality of life.

During an end of life hearing, the provider’s testimony is a critical part of the decision making process. Physicians are asked to comment on the medical condition of the individual as well as the expected outcome of Life-Sustaining Treatment (LST). Once again the quality of the individual’s life is discussed and comfort care is considered as an option to provide relief from pain and suffering. Once the decision has been issued in writing, the SDMC is identified as the decision maker and that information must be attached to the MOLST checklist.

As the program came to a close, each of the speakers shared parting thoughts with the participants. Katie Orem from Excellus BlueCross BlueShield who spoke earlier in the day about MOLST said “Please offer conversations appropriately early and be sure to ask if you have any questions regarding specials rules”. Laura Monthie encouraged attendees to be in contact if they ever encounter questions and are in need of assistance. The SDMC-Justice Center is located in Schenectady, New York and can be reached by phone by dialing (518)549-0328 or by email at