COFAR blog

On Tuesday of last week, Irene Tanzman and I testified before the Legislature’s Children, Families, and Persons with Disabilities Committee against a bill (H.261) that would authorize Supported Decision Making (SDM) in Massachusetts.

The Committee scheduled us last to testify on that bill. I counted 21 people who testified in favor of it. We were 22nd and 23rd, and were the only ones to raise any critical questions about the legislation.

Irene, a COFAR member, testified on behalf of the National Council on Severe Autism. She has also founded the Saving Wrentham and Hogan Alliance, an organization dedicated, as we are, to preserving those two congregate care facilities as options for residential care in Massachusetts.

In our view, the actual purpose of the SDM legislation is ultimately to eliminate guardianships of persons with intellectual and developmental disabilities (I/DD). We maintain that 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.

Co-chairs favor the bill

The Children and Family Committee members asked no questions of either Irene or myself about our position on H.261, yet it’s clear both co-chairs, Senator Robyn Kennedy and Representative Jay Livingstone, strongly favor the legislation.

Livingstone is the main sponsor of the House bill, and Kennedy said a couple of times during the hearing that she hopes this is the year the legislation passes. Kennedy even made a joke that the apparently non-progressive state of Texas has gone ahead of Massachusetts in passing SDM legislation. “We certainly don’t want to fall behind Texas in anything,” she said.

But is SDM really progressive, or is it a back-door means of taking decision-making power away from families? 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 and a lack of safeguards in the legislation, which has been repeatedly introduced over the years in Massachusetts. In recent years, the measure has gotten closer and closer to final passage.

Both Irene and I testified that 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.

Perhaps the most onerous provision in H.261, as we have pointed out to key legislators, is that it 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 arrangements.

Thirdly, 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 has ever been adopted by the drafters of the legislation.

Committee asked only one question of anyone

To be fair, only one member of the the Children and Families Committee, Representative David LeBoeuf, asked a question of any of the people who testified on the SDM legislation on Tuesday. Those individuals who testified, all of them supporters of the legislation, included representatives of the Arc of Massachusetts, and a number of legislators, including Senator Joan Lovely and Representative Sean Garballey.

LeBoeuf asked Morgan Whitlatch of the Center for Public Representation, a leading proponent of SDM in Massachusetts, whether she thought provisions in the bill to prevent conflicts of interest and coercion of persons with I/DD are sufficient. Whitlatch responded that she believes those provisions in the legislation are “quite robust.” We would disagree with that assessment.

That lack of questioning of either us or of the supporters, and Kennedy’s cheerleading of H.261 during the hearing, which wasn’t contradicted by anyone else on the Committee, conveyed the impression to us that the Committee has already made up its mind in favor of the legislation. Scheduling the SDM legislation for the Tuesday hearing was strictly a formality.

There is no doubt the Committee will report favorably on H.261 and its companion S.155, and will make no changes to those measures; and the legislation will move on, as it has in the past, through the committee process. We intend to continue to follow the progress of the legislation and alert other committees about it.

Other bills, which we support

During Tuesday’s hearing, the Children and Families Committee heard testimony on other bills as well, a number of which we have supported or would support. Those bills include the following:

H.282, also known as “Tommy’s Law”:

This bill would require that when a disabled individual is discharged from a hospital to a residential facility, a licensed medical professional from the facility must review the hospital’s discharge plan for any life support or other medical equipment. The medical professional must then advise the residential staff about those requirements.

Several years ago,  we reported that Maureen Shea’s son, Tommy, who was then 33, was found dead, face-down on his bed, in his DDS-staffed apartment in June 2017. Tommy had an intellectual disability and was subject to epileptic seizures while asleep.

Tommy’s bedroom was equipped with an audio and visual monitor that could alert the staff so that they could make sure that during a seizure he didn’t roll over face-down — a position that can prevent breathing.

Maureen and her daughters were nevertheless concerned that the residential staff did not regularly check the monitor’s batteries, and that they had not been adequately trained in how to position the device. But the nonprofit provider that employed the staff had repeatedly assured Maureen that the staff were trained and were knowledgeable about Tommy’s medical equipment.

After Tommy died, the batteries in the monitor were found to be dead.

Maureen has been advocating for this legislation for many years. She was there to testify in favor of it last Tuesday. We don’t understand why this bill has still not been enacted into law.

H.198, a bill authorizing video cameras in group homes:

This legislation, which has also been repeatedly refiled for many years, would require video cameras to be installed at all entrances, exits, and common areas of residential facilities operated or funded by DDS. As we noted in 2019, we support the bill in concept although we’re not sure how effective the measure, as currently drafted, would be because it would not require security cameras in bedrooms.

H.256, Universal changing stations:

This bill would require that any state-owned public building containing a public bathroom that was constructed or remodeled after January 1, install at least one universal changing station.

A universal changing station is an adult-sized changing table designed to hold at least 350 lbs. It would be located within an enclosed restroom facility and would be for use by persons of any age who require assistance with diapering, and would be accessible by persons of any sex.