COFAR blog

A legislative committee will hold a hearing next week on seriously flawed, proposed legislation that would introduce Supported Decision Making (SDM) in Massachusetts and make it harder to become a guardian of a person with an intellectual disability.

The Children, Families, and Persons with Disabilities Committee has scheduled the hearing for Tuesday, September 9, at 1 p.m. in Room B-2 of the State House in Boston. We are urging our members and others to attend and testify against the bill (H.261).

Two other bills (S. 155 and H. 264), which would also authorize SDM, are also on the September 9 hearing list. We are urging that those bills be opposed as well.

[IMPORTANT NOTE: To sign up to provide oral testimony, you must fill out this online form prior to Thursday, September 4^th at 2:00PM. Same-day, in-person testimony will be accepted, time permitting. Also, you will not be able to sign up for virtual testimony on the day of the hearing.]

As noted below, we think the actual purpose of this legislation is ultimately to eliminate guardianships of persons with intellectual and developmental disabilities (I/DD). We believe guardianships, however, are the most effective source of authority that family members have to ensure that their loved ones receive adequate care in the Department of Developmental Services (DDS) system.

SDM authorizes written agreements to replace guardians of persons with I/DD with informal teams of “supporters” or advisors. The supporters are expected to provide those individuals with “decision-making assistance” about their care and finances.

We have long pointed out numerous problems with the legislation, which has been repeatedly introduced over the years to implement SDM in Massachusetts. In recent years, the legislation has gotten closer and closer to final passage.

While we think the concept of SDM may be appropriate for high-functioning individuals who may not need guardianship, we are concerned that the legislation does not make any distinction among levels of cognitive impairment.

The implication of the legislation is that all persons with developmental disabilities can benefit equally from SDM. However, as noted below, there has been a dearth of research as to whether SDM arrangements really do benefit people with severe or profound levels of I/DD. In fact, it seems possible that SDM can increase the risk those people face of financial exploitation, in particular.

Additional burden of proof

As we have pointed out to key legislators, the SDM legislation would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian.

The legislation specifically would require those petitioners to state why a more limited guardianship or an SDM agreement is “inappropriate.” We think that provision may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.

Among the other problems with the SDM legislation that we have identified are the following:

• The incapacitated individual is labeled “the decision maker.” There are no distinctions among levels of disability. Thus, there is no consideration in the legislation as to whether persons with low levels of cognitive functioning are capable of making and appreciating life-altering decisions.
• The legislation does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to DDS.

Unfortunately, none of our proposed improvements or safeguards have ever been adopted by the drafters of the legislation.

Lack of research on effectiveness of SDM at different levels of impairment

SDM has been adopted in a number of other states, and there have been some studies concluding it has had positive outcomes for participants. But there has apparently been little or no research as to how effective it has been for people with more severe levels of cognitive impairment. Like community-based care, SDM may work well for high-functioning people, but not necessarily as well for low-functioning people.

In a position paper on SDM, the VOR, a national organization with which we are affiliated, warned that, “In the process of attempting to change guardianship laws, it (SDM) could weaken protections for those who are the most vulnerable.”

The VOR statement added that:

The more individuals are able to express their wishes and play an informed, responsible role in their own decision-making, the more their participation should be included. But, it is irresponsible to remove an individual who lacks the capacity to make his or her own decisions from the protection of the court and ongoing evaluation.

VOR maintains that problems with guardianship can be avoided through strong enforcement and monitoring and better access to information on guardianship. “To eliminate guardianship or make it more difficult for family members and friends to become guardians will leave people with I/DD more vulnerable to the abuse, exploitation, and neglect that guardianship is designed to prevent,” the organization’s position paper stated.

Also, as a study in the journal Psychiatry found,

As an empirical matter, it is not proven whether, and to what extent, SDM may be associated with better decisions… greater satisfaction with the decision making process, and an increased sense of empowerment among individuals with cognitive disabilities. Some authors have expressed concerns that SDM, like substitute decision making (guardianship), may expose individuals with disabilities to undue influence or coercion by their alleged supporters, thereby effectively disempowering them.

We think SDM may impose a greater risk of disempowering individuals with I/DD than would guardianships held by family members, in particular. In our experience, family members are more likely to act in the best interests of their loved ones than are professional caregivers, clinicians, and managerial personnel.

SDM statute not actually needed

Finally, we would note that legislation to implement SDM may not actually be necessary. As David English, a Professor of Law at the University of Missouri School of Law, has noted, “Despite the recent flurry of SDM statutes, there is a debate on whether such statutes are needed or useful and a lack of consensus on what features the statutes should contain.”

English pointed out that, “SDM arrangements can be implemented today in all 50 states, statute or no statute, by creating formal, written SDM agreements or well-understood informal arrangements. A good legal advisor can help create an agreement appropriate to an individual’s unique situation.”

That leads us to the conclusion that the real reason for the SDM legislation now before the Children and Families Committee may actually be to discourage and ultimately eliminate guardianship of people with I/DD, no matter how severe or profound their impairments are.

The prime means in the SDM legislation for accomplishing that objective of eliminating guardianship appears to be the provision that establishes the additional burden in court on persons petitioning to become guardians.

At the very least, we would urge that that onerous provision be removed from H. 261 and any of the other SDM bills that the Children and Families Committee may approve and send to the next stage in the ongoing legislative process.