The Medical Aid in Dying Act and those with IDD
Dear Doris,
I care for my brother who has a developmental disability. I recently read about the Medical Aid in Dying Act signed by New York Governor Hochul early last month. I am curious, in what ways might this impact individuals and caregivers in the Intellectual and Developmental Disabilities (IDD) community?
Thank you,
Marion R.
Dear Marion,
As is often the case, this is a complicated issue and not a simple answer. I can share what we learned from our last webinar leader who talked about End of Life and IDD. Here is what she had to say:
As of now, NY does not have legalized, general “medical aid in dying “meaning there are no active OPWDD regulations permitting or regulating it. Currently NY law strictly requires that death of individuals receiving OPWDD service, including those with end-of-life care, be reported to the Justice Center for the Protection of People with Special Needs for mortality review within 24 hours.
As of now, OPWDD providers operate under OPWDD regulations and guidance requiring the completion of a capacity evaluation by a licensed psychologist with 2 or more years of experience working with the IDD population to determine if the individual can make their own medical decisions. If the person does not have the capacity to make their own medical decisions the completion of the 6-step process is completed with a surrogate decision maker which is then sent to the CEO of a facility or DDSO Commissioner, and MHLS for their review and determination of a letter of no objection.
Once there is a letter of no objection obtained from both CEO/DDSO and MHLS, the MOLST form is completed. There is then a 48-hour waiting period before life sustaining treatment can be withheld or withdrawn. If there is no HCP or surrogate decision maker, the need to withhold or withdraw life sustaining treatment will go in front of the Surrogate Decision Making Committee. It is imperative that all paperwork be completed in full to include detailed letters from qualifying physicians, and necessary signatures are obtained to ensure legal competency.
Back to you and your brother. There are ways to stay on top of this evolving topic. OPWDD and other organizations offer information through monthly newsletters and updates. To know what to proactively put in place, you can visit https://opwdd.ny.gov/providers/health-care-decisions for specific examples and forms.
Thank you for your question and best wishes as you continue your caregiving journey,
Doris