COFAR blog

A redrafted version of Supported Decision Making (SDM) legislation, which appears to be close to enactment in the state Legislature, would give a major banking lobbying organization a key role in implementing SDM in Massachusetts.

The latest SDM bills (H.4924 and H.4949), which are actually identical drafts, have been sent to the House Rules and House Ways and Means Committees respectively, and either one of those bills appears to be a step away from enactment on the House and Senate floors.

Each bill specifies in the latest redraft that the Massachusetts Bankers Association would be involved both in developing a training program on the rights and obligations of SDM supporters, and in studying the feasibility of a state registry of all existing SDM agreements in the state.

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.

On August 15, I sent emails to the Senate president, House speaker, and chairs of the Children, Families, and Persons with Disabilities Committee, Judiciary Committee, Rules Committee, and House Ways and Means Committee, expressing concern that the redrafted legislation contains a number of flawed provisions.

In a subsequent email last week (August 22), I sent a follow-up email to the co-chairs of the Children and Families Committee, arguing that the legislation also fails to address a potential conflict of interest involving the Mass. Bankers Association.

We maintain that the redrafted 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 new provision against conflicts of interest held by SDM supporters.

Mass. Bankers role

In an emailed response on August 20 to my first email, State Representative Jay Livingstone, House chair of the Children and Families Committee, maintained that the Mass. Bankers Association was added to the legislation because, “Financial institutions may be requested to accept the (SDM) agreements. The Mass. Bankers Association’s expertise may be helpful to represent those interests,” he added.

The Bankers Association is one of five non-governmental organizations given roles by the legislation in developing SDM, including the Arc of Massachusetts, the Disability Law Center, the Mass. Medical Society, and the Mass. Health and Hospital Association.

Livingstone also responded to a number of my other concerns, as I’ll discuss below. Unfortunately, our concerns about the legislation have not been assuaged.

With regard to the Mass. Bankers Association, we are concerned that banks and other financial organizations may have interests in financing or investing in the development of care facilities or corporate provider organizations, and that those financial interests could then assume a prominent role in SDM training programs or even agreements under the legislation. There is no provision in the legislation to prevent conflicts of interest involving banking, investment firms, or other financial interests in SDM arrangements.

For instance, the Mass. Bankers Association listed (H.4977), which will provide millions of dollars to finance Accessory Dwelling Units (ADUs), as a bill it was tracking this year. The bill has since been signed into law. The Arc of Massachusetts describes the development of ADUs as “one of its priorities over four sessions.” ADUs may well be a subject of consideration by SDM supporters.

We think it would be more appropriate to select a neutral individual who might be a faculty member of a university business school or economics department as an SDM training consultant, rather than selecting a member of the Mass. Bankers Association.

Major changes to Uniform Probate Code

Both SDM bills (H.4294 and H.4949) were reported favorably late last month by the Children, Families, and Persons with Disabilities Committee and are now in the House Rules and House Ways and Means Committees respectively. This legislation would make significant changes to the Massachusetts Uniform Probate Code (M.G.L. c. 190B), and yet the legislation has not been voted on favorably by the Judiciary Committee.

We are concerned that this redrafted legislation, which has not had a public hearing, could be enacted without a roll call vote in informal House and Senate sessions at any time.

Sets up conflict between SDM supporters and families and guardians

Under the redrafted legislation, it appears that an individual under a full guardianship could also sign an SDM agreement. In that case, we asked the legislators, what would the resolution process be if there were a dispute between the SDM team and the guardian?

In his August 20 response, Rep. Livingstone stated that, “Once an individual becomes subject to a full or plenary guardianship, they could not sign an SDM agreement. An SDM agreement is an alternative to guardianship.“

But that does not appear to be the case. There doesn’t appear to be any language in the legislation that would preclude signing an SDM agreement if there is a full or plenary guardianship.

At another point in his response, in fact, Rep. Livingstone stated that, “If the (probate) court that created the guardianship left a SDM agreement in place in whole or in part, the court should work out the roles and responsibilities of each. If there was a conflict (between a guardian and SDM supporters), the parties could go back to court to resolve the issues if they could not work them out themselves.”

However, as I replied to Livingstone, the legislation doesn’t require the court to work out the roles and responsibilities of each party. Further, having the parties “go back to court to resolve the issues” would automatically place the guardian at a disadvantage, in our view, if, as is likely, the supporters would outnumber the guardian in any court proceeding.

Questionable access to medical records

The legislation states that an intellectually disabled “decision maker” may provide a supporter with access to their medical records, including confidential health information, and with access to psychological, financial and other records. The legislation later states that the SDM agreement must “specifically reference” a supporter’s access to medical records etc.

To us, this raises the question: If the decision maker is under a full or plenary guardianship, why would it be necessary for SDM supporters to have access to these records unless the supporters’ authority were equal or greater than the guardian’s authority?

Questions about confidentiality

In granting access to confidential records to SDM supporters, the legislation states that a supporter “shall keep confidential any information obtained in the process of assisting the decision-maker.”

To us, this raises the question: Does this provision require a supporter to decline to disclose such information to either the guardian or to other supporters?

Livingstone responded that an individual supporter would be required to keep such information completely confidential “unless directed to (reveal it) by the decision-maker.”

This is a particularly troubling provision in that it could be used by SDM supporters to marginalize family members or guardians by keeping them in the dark regarding important aspects of an individual’s health or medical care.

Weak conflict of interest provision

The redrafted legislation states that a supporter “shall not participate in any life decision in which they have a conflict of interest.” This includes, the legislation states, “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, which was the case under previous versions of the SDM legislation. 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.

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

Also, whether a specific conflict of interest exists in a particular matter could be open to interpretation. We believe employees of providers that offer services to SDM “decision makers” should not be allowed to participate in SDM agreements period.

No enforcement of anti-coercion provision

The legislation states 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 evidence of this?

Livingstone responded that, “An interested party would need to report alleged undue influence or coercion in an SDM agreement’s creation or signing to the Disabled Persons Protection Commission, the Elder Abuse Prevention Hotline or the court for any further action.”

The problem is the legislation does not state that the Disabled Persons Protection Commission (DPPC) should investigate allegations of undue influence or coercion in the signing of an SDM agreement.

The DPPC’s enabling statute (M.G.L. c. 19C) requires the DPPC to investigate allegations of abuse or neglect that causes significant physical or emotional injury. The DPPC’s regulations (118 CMR 2.02) state that serious emotional injury can result from coercion; but it is unlikely that the regulations contemplate the type of coercion referred to in the SDM legislation.

The often subtle coercion that would be involved in the signing of an SDM agreement would be unlikely, or at least would not necessarily result in emotional distress to the signer. As a result, even if such an allegation of coercion was made to the DPPC, it isn’t clear that the agency would be statutorily required or authorized to investigate it.

Similarly, there is no way to enforce other feel-good provisions in the legislation, such as one stating that a supporter must “respect the values, beliefs, and preferences of the decision-maker, act honestly, diligently, and in good faith; act within the scope identified by the decision-maker, (and) support and implement the direction, will, and preferences of the decision-maker.”

Termination provision unworkable for persons who are unable to communicate

The legislation states that the decision-maker “may amend or terminate a supported decision-making agreement at any time…”

But what would the process be for termination if the decision-maker were unable to communicate?

Livingstone stated that, “If the decision-maker became incapacitated while the SDM agreement was valid, the bill provides that the agreement would be terminated.”

The problem is that “incapacitation” is not defined in the legislation. Any individual under guardianship is considered under the Probate Code to be incapacitated (see M.G.L. c. 190B, s. 5-303). This, in fact, goes to a key problem we have repeatedly identified with the SDM legislation. The legislation does not provide a standard level of capacity of an individual below which SDM would not be feasible.

Additional burden of proof

As we have repeatedly pointed out to the legislators, all of the versions of 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.”

Perhaps the major concern we have also repeatedly raised about the SDM legislation is, as noted, that it doesn’t specify a level of functioning or decision-making capacity below which an SDM arrangement would not be considered feasible. 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.

As a result, under the SDM legislation, anyone can sign an SDM agreement, no matter how low their cognitive functioning might be, and then be labeled the “decision maker” in that agreement. That aspect of the legislation alone shows that it is not based in reality.

For all of these reasons, we hope lawmakers do not enact this legislation in the remainder of the current legislative session. SDM may work for some high-functioning individuals. But it needs to go back to the drawing board in Massachusetts.

Legislation that would authorize Supported Decision Making (SDM) as an alternative to guardianship of persons with intellectual and developmental disabilities (I/DD) in Massachusetts is once again close to final passage in the state Legislature.

This time, the circumstances surrounding the legislative process involving the bill are particularly troubling.

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

On July 29, with two days to go in the formal 193^rd legislative session, the Children, Families, and Persons with Disabilities Committee referred two newly revised, identical SDM bills — H.4924 and H.4949 — to the Rules Committee.

Although the 193rd legislative session is now formally over, we understand that either or both of the redrafted bills can be referred at any time until the end of the year to either the House or Senate floor for final enactment. Once referred, the legislation could be enacted in “informal sessions” unless there is an objection from a lawmaker.

During informal sessions, there are usually only a few legislators present, and no roll call votes are taken.

Yet, the redrafted legislation appears to make major changes to the Massachusetts Uniform Probate Code (M.G.L. c. 190B), a set of provisions governing the probate court system.

Prior to July 29, the Children and Families Committee had delayed taking action on an earlier version of the legislation for more than a year.

In our view, guardianship is the most important legal protection family members have to ensure adequate care and services for their loved ones with I/DD.

In an email I sent last week (August 8) to key legislators, I said that legislation imposing arrangements that weaken guardianship also weakens the decision-making rights of families.

I noted that the redrafted legislation doesn’t address specifc oncerns we had previously raised about SDM with those legislators. While SDM may be appropriate for high-functioning individuals, it may expose lower functioning persons to financial exploitation and reduce the input family members have over their care and services.

Arrangements that weaken guardianship further violate the spirit of the federal Developmental Disabilities Assistance and Bill of Rights Act, which states that family members of persons with I/DD are the “primary decision-makers” in their care and services.

No vote by the Judiciary Committee

In addition to the lack of a roll call vote if the redrafted SDM bills are now taken up in the House or Senate, it appears the bills have not been voted on by the Legislature’s Judiciary Committee. The Judiciary Committee has jurisdiction over legislation pertaining to the courts in Massachusetts and the Probate Code.

Also, there has been no public hearing on the redrafted legislation, which appears to be substantially different from an earlier version of the measure. The Children and Families Committee did hold a public hearing on the earlier version in September 2023.

A staff member of the Children and Families Committee told us that the Judiciary Committee was involved with the Children and Families Committee in drafting H.4924 and H.4949. However, there is no indication on the Legislature’s website that the redrafted legislation was actually voted on favorably by the Judiciary Committee.

Committee co-chair says “plenty of time” for our concerns to be considered

In a response to my August 8 email, Representative Jay Livingstone, House chair of the Children and Families Committee, maintained that, “There is plenty of time for this bill and your (COFAR’s) comments to be considered.”

We hope that is the case, although we had raised concerns about the SDM legislation with the Children and Families Committee last year.

Livingstone also said there was “still a possibility” of a roll call vote on the redrafted legislation this year because the Senate president and House speaker have agreed to call a special session at some point before the end of the year. Nevertheless, it isn’t clear whether the SDM bills would be taken up during that special session if they are enacted this year.

Livingstone further acknowledged that the Judiciary Committee has not voted on either H.4924 or H.4949.

Redrafted legislation raises questions

In one respect, we think the redrafted legislation might be better than the earlier version of the measure.

Apparently based on a concern we raised last year, the redrafted legislation (H.4924 and H.4949) would prohibit an SDM supporter from having a conflict of interest involving their employer.

However, it isn’t clear that the redrafted legislation would completely rule out human services provider employees from serving as SDM supporters. Those individuals would be prohibited only from participating in specific “life decisions” in which they or their employers had a financial interest.

Moreover, we think the redrafted legislation as a whole would still weaken guardianship because it would set SDM up in the Probate Code as an alternative to guardianship. Under the redrafted legislation, anyone petitioning in probate court to become a guardian would have to state why either a more limited guardianship or an SDM agreement was “inappropriate.”

That SDM provision would add to the burden of proof that a petitioner already faces in probate court in order to become a guardian. Yet, an SDM agreement itself apparently doesn’t require similar court approval. Overall, we think that this legislation may predispose probate court judges to deny guardianship petitions in favor of SDM agreements.

Another concern we have about the SDM legislation is that it doesn’t specify a level of functioning and decision-making capacity below which an SDM arrangement would not be considered feasible. 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.

For all of those reasons, we think this is not the time to enact this legislation. We hope legislative leaders will recognize the need to go back to the drawing board in the next legislative session, and address the concerns we have raised.