The Virginia Academy of Elder Law Attorneys (VAELA) supports the retention of independent decision-making authority by individuals with ID, DD, and other cognitive challenges, whenever feasible and appropriate. The SDM Agreements set forth in this Guidance may be very useful for informing supported decision-makers when an individual has capacity. They could also be very helpful to guardians and conservators, as substitute decision makers, in understanding their roles in supporting the individual’s independence, by fleshing out the decision-maker's interests, concerns, and perspectives.

But we have serious concerns that the proposed SDM Agreements may also contribute to the belief that an SDM Agreement is a substitute for a Power of Attorney and Advance Medical Directive. We believe that virtually every adult with the requisite capacity to do so should consider executing a Power of Attorney and Advance Medical Directive.  Our concern that SDM Agreements will be used in place of these documents is magnified by the proposed “Purpose” statement on the first page of the document.  In order to minimize this concern, we suggest replacing the fourth sentence in that section with this:

SDM Agreements are not legally binding or enforceable, and while they are a good support mechanism for supporters, as well as for agents under powers of attorney and advance medical directives, guardians, and conservators, they are not a replacement for any of these.  

In addition, we think SDM Agreements would provide greater utility if they included a “black box warning” that reminds the decision-maker and supporters that these other documents remain necessary.  We suggest adding this Black Box warning under Step 1, page 3 of 47, as follows:

This warning should also be included on the Agreement itself.

We continue to have grave concerns about promotion of any SDM Agreement, since these “Agreements” are not, in fact, legal contracts, legally binding, or legally enforceable, and the use of that term will be confusing.  But because the process of working through the template, as well as the “product” then created, makes this potentially a very valuable tool, it should more appropriately be called a “Statement of Intent” or “Supported Decision-Making Plan.”  We encourage development of this and other tools, to promote and encourage autonomy and independence in decision-making.

Stephen Burns, Amy McCullough, Rhona Levine, co-chairs

VAELA Public Policy Committee