COFAR blog

Last year, we worked to stop a flawed bill in the state Legislature that would have introduced Supported Decision Making (SDM) in Massachusetts.

Fortunately, that legislation died at the end of the previous two-year legislative session when two separate committees declined to release identical versions of the bill to the House and Senate floors.

The bad news is that not only has the legislation not surprisingly now been refiled in the new legislative session, but everything we objected to last year has remained in the bill. None of our proposed changes to the legislation that would possibly have made it workable have been adopted in the new draft.

The refiled bill, H.261, is sponsored by Representatives Jay Livingstone and Michael Finn. Livingstone is House chair of the Children, Families, and Persons with Disabilities Committee, and is familiar with our objections to last year’s version of the bill.

Last year, the Children and Families Committee reported the legislation favorably and sent one version of it to the Rules Committee and another version to the House Ways and Means Committee. Neither of those two latter committees acted on the measure, however, and it died at the end of the session.

However, the legislation is again before the Children and Families Committee, and appears to be identical to last year’s version. No doubt, the Children and Families Committee, which has the same co-chairs as last session, will report the bill favorably again in this session.

In the Senate, S. 155, refiled by Senator Joan Lovely, contains much of the same language as H. 261. The Senate bill is also now before the Children and Families Committee.

Mass. Bankers Association still involved

As was the case with the final version of the legislation last year, the Massachusetts Bankers Association would be involved in the implementation of SDM, under this year’s legislation.  The lobbying organization would be involved in developing a training program on the rights and obligations of SDM supporters, and would be appointed to an SDM commission that would study the feasibility of a state registry of all existing SDM agreements in the state.

Without safeguards, SDM appears in our view to hold a potential to overturn guardianships of persons with intellectual and developmental disabilities (I/DD).

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

However, “incapacitation” is not defined in the legislation. Any individual under guardianship is considered under the Probate Code to be incapacitated. The SDM bills do not provide a standard level of capacity of an individual below which SDM would not be feasible.

Under the legislation, the incapacitated individual is labeled “the decision maker.” The legislation, as has always been the case in the past, defines the “decision maker” in an SDM arrangement only as “an adult who seeks to execute, or has executed, a supported decision-making agreement with one or more supporters.”

There are no further qualifications for being a 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 would also introduce conflicts between SDM supporters and guardians; does not direct the probate court to resolve those conflicts; and does not direct the Disabled Persons Protection Commission (DPPC) to enforce a provision against coercion in signing SDM agreements. The legislation also does not provide any means of enforcing a weak provision against conflicts of interest held by SDM supporters who work for corporate providers to the Department of Developmental Services (DDS).

Additional burden of proof

As we have pointed out to Representative Livingstone and other 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. Thus, we think that this legislation may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.

The legislation specifically would require anyone petitioning in probate court to become a guardian to state why a more limited guardianship or an SDM agreement was “inappropriate.” (emphasis added)

That additional burden requires a change to the Massachusetts Uniform Probate Code (M.G.L. c. 190B). So, while proponents of SDM often insist that the process of entering into SDM agreements is completely voluntary and informal, there is nothing voluntary about the additional burden the legislation would place on persons petitioning to become guardians of family members with I/DD.

And that raises the question whether signing an SDM agreement is really voluntary for every potential “decision maker.”

Is SDM really voluntary or is that wishful thinking?

Much of the verbiage in the SDM legislation and among proponents of SDM appears to be wishful thinking, particularly, that the process of entering into SDM arrangements is completely voluntary.

The legislation states, for instance, that “evidence of undue influence or coercion in the creation or signing of a supported  decision-making agreement shall render the supported decision-making agreement invalid.”

But who would determine whether there was undue coercion in those cases, and how would it be enforced? The legislation doesn’t answer those questions.

Moreover, the bill defines “coercion” as “the use of force or threats to persuade someone to do something.” But people with I/DD often don’t have the level of skepticism or other cognitive defense mechanisms to prevent what may be much more subtle forms of coercion than outright threats or force.

Other wishful-thinking provisions in the legislation include a statement that SDM supporters must “Act honestly, diligently, and in good faith.”  Also, that supporters must “Act within the scope identified by the decision-maker,” and that they must “Support and implement the direction, will, and preferences of the decision-maker. “

It is impossible to enforce those provisions because it is often impossible to know in many cases what the will or preferences are of persons who don’t fully understand the choices they are being asked to make.

Similarly wishful is a statement in the legislation that “(SDM) supporters shall not make decisions for the decision-maker.” It is meaningless to assume in every case that a person with ID is meaningfully making key decisions.

Fraud and abuse enforcement provisions are weak

The SDM legislation does appear to recognize that fraud and abuse could be at play in SDM arrangements because it specifically authorizes the DPPC and DDS to petition the probate court to revoke or suspend SDM supporters “on the grounds of abuse, neglect, exploitation or failure of the supporter to follow their roles and responsibilities resulting in serious physical, emotional, or financial harm to the decision-maker…” (emphasis added)

The legislation further states that “a person who has cause to believe that the decision maker is being abused, neglected or exploited by a supporter, may report the alleged abuse, neglect or exploitation to the DPPC.”

However, the DPPC, in particular, does not have the resources to conduct more than a small percentage of abuse and neglect investigations of caretakers.  As a result, the DPPC refers most abuse investigations to DDS, which as we have pointed out, raises its own set of conflict-of-interest issues.

As a result, it seems unlikely that either the DPPC or DDS would petition the probate court to revoke or suspend SDM supporters unless there were overwhelming evidence of such abuse.

Seeking to prevent guardianships prior to adulthood

As was the case with previous versions of the legislation, the current House and Senate bills would require the state to promulgate regulations to inform secondary education students of “the availability of SDM as an alternative to adult guardianship.”

So, the intent here appears to be to persuade parents to enter their children with developmental disabilities into SDM arrangements on their 18^th birthdays when parents would normally petition for guardianship. The legislation specifically states that at the first IEP (Individual Education Plan) meeting after a student has turned 16, the IEP team must “inform the student and their family or guardian, of the availability of supported decision-making agreements as an alternative to guardianship and conservatorship.”

In addition, the IEP team would be required to assist the child and their family or guardian “in locating resources to assist in establishing a supported decision-making plan if the child and their family or guardian are interested in supported decision-making.”

This is concerning to us because it appears to be intended to discourage families from seeking guardianship when their disabled children turn 18. That, in our view, would be a step toward eliminating guardianship altogether.

Records-sharing requirement raises concern

As was the case previously, the current legislation gives individual SDM supporters the authority to obtain confidential psychological and medical information about the disabled individual, and then requires them to keep that information confidential from others.

That leads to a question: If the disabled individual also has a guardian, why would SDM supporters with no formal relationship to the person also need access to those records? And, if one or more of those supporters was to find something concerning in the records, would they be required to keep that information from the guardian due to the confidentiality requirement?

Weak conflict-of-interest provision

The newly filed legislation does not improve on what was a weak provision in previous SDM legislation regarding a potential conflict of interest that arises when SDM supporters are also employees of DDS-funded group home providers.

The legislation states that:

A supporter shall not participate in any life decision in which they have a conflict of interest. This includes, but is not limited to, any decision in which the supporter, his or her immediate family or partner, a business organization in which he or she is serving as officer, director, trustee, partner or employee has a financial interest or other direct and substantial interest in the outcome.

Such a provision is better than nothing. But even under this provision, an employee of a provider serving the individual could nevertheless serve as an SDM supporter and participate in life decisions in which the provider doesn’t have a direct financial interest. For instance, it could be a possible future financial interest.

In our view, this provision does not fully protect individuals with I/DD against conflicts of interest by supporters. The legislation also doesn’t provide for enforcement of this provision.

We believe employees of providers that offer services to SDM “decision makers” should not be allowed to participate in SDM agreements, period.

We urge people to send emails to the co-chairs of the Children and Families Committee with a link to this post. Ask that the Committee work to finally address our concerns about this legislation.

The Committee co-chairs are Senator Robyn Kennedy at Robyn.Kennedy@masenate.gov, and Rep. Livingstone at Jay.Livingstone@mahouse.gov.

Thanks!