Many people with developmental disabilities are and have been using SDM informally, without legislation, and will continue to do so. But there are a number of reasons why SDMA legislation is necessary to ensure that SDM is an available, less-restrictive alternative to guardianship. They include ending discrimination against Decision-Makers with developmental disabilities, removing disincentives to using SDM, and affirming that SDM is a viable alternative to guardianship.
SDMNY was charged with developing an evidentiary base for any prospective SDMA legislation In New York. While we do not and cannot support any specific piece of legislation that may be introduced, we offer what we have learned to educate those who may be interested or engaged in policy relating to SDM and/or to the legislative process.
Preventing/overcoming discrimination based on disability
Because of stigma, bias, or just plain lack of knowledge about what people with developmental disabilities are capable of, third parties—health care providers, financial institutions, landlords, etc.—assume they lack legal capacity because of their disability. Even where a person with a developmental disability has a properly executed a health care proxy or other documents intended as an alternative to guardianship, third parties may refuse to accept those documents or the decision of the person, instead insisting that a guardian must be appointed in order for them to provide the requested service or enter into the requested agreement.
We live in a very litigious society, with almost everyone afraid of being sued. When people with developmental disabilities are concerned, there is fear that after the service is performed, the care given, or the transaction completed, someone will come forward and claim that the person with DD lacked capacity to consent or enter into the transaction, and a costly lawsuit may follow. The logic follows: Better to insist on a guardian—then there can be no question of legal authority since the court appointed her/him.
An SDMA statute solves this problem. Once the third party is presented with a statutorily approved SDMA, they are required to accept the Decision-Maker’s decision/consent, and, as long as they do so in good faith, they are relieved from any civil or criminal liability and, if the statute provides, from any professional discipline. This is especially important for doctors and other health care providers.
Removing disincentives to trying and/or using SDM
A second important reason is directly connected. Because parents may have experienced third-party nonacceptance of decisions made by their adult children with developmental disabilities, or have been told in advance that it will occur when their children reach 18, or because they know of others to whom it has happened, they are incentivized to seek guardianship even if their children do not need it, or if less-restrictive alternatives, including SDM, are available. In numerous information sessions with parents, SDMNY staff have heard the following, or some variation:
Why should we and our adult child go through all the work and time involved in making an SDMA when, at the end of the day, some doctor is going to tell us that they won’t accept our adult child’s consent to treatment, and that if we really want that treatment, we need to get guardianship?
An SDMA statute definitively answers that question. The doctor must accept the consent and cannot be sued or professionally disciplined for doing so. An independent evaluation commissioned by SDMNY demonstrated that virtually every parent or other putative petitioner for guardianship believed that “legalizing” SDM and giving statutory recognition to SDMAs was important, and would be a critical factor in deciding to try SDM instead of guardianship. To the extent that SDM constitutes a less-restrictive alternative to guardianship for many people with developmental disabilities, legal recognition of SDMAs through legislation makes it exponentially more likely that parents and others will be willing to try it rather than depriving their adult children of all their legal rights because of what a third party, who fears liability or who is biased against persons with disabilities, may say.
Affirming SDM as a viable alternative to guardianship
Studies and our experience at SDMNY show that parents are told, virtually from the time their children receive a diagnosis, that they should pursue guardianship when those children become legal adults. This message is reiterated and amplified by schools, health care professionals, and other parents, so that by the time their children reach 18, guardianship appears both natural and necessary. Studies also show that many parents are unaware of the draconian consequences of guardianship, with the loss of all legal and civil rights, and are similarly unaware of alternatives.
SDM is still relatively new and has not yet penetrated the education or health care systems, so it seems something of a risk for parents who have been told, again and again, that guardianship is the way, perhaps the only way, to protect their “vulnerable” children. Legislative recognition of SDM is enormously important to shift the balance toward considering a real and proven alternative that is, as well, constitutionally required.
Existing SDMA statutes generally begin with definitions or statements of legislative purpose, such as the Rhode Island SDMA statute that reads:
(a) The purpose of this chapter is to achieve all of the following:
(1) Provide assistance in gathering and assessing information, making informed decisions, and communicating decisions for adults who would benefit from decision-making assistance; and….
(4) Establish the use of supported decision-making as an alternative to guardianship.
Such affirmation would, as numerous parents have said, provide confidence in attempting and using SDM as an alternative by which their children would not only retain their legal rights, but that would enhance their autonomy, self-determination, and the ability to live their best lives.