Mother pushes for medical training bill after her son dies following a seizure
Maureen Shea’s son, Tommy, had just returned on June 7, 2017, from a two-week stay in a hospital to his staffed studio apartment.
Tommy, who was 33, had an intellectual disability and was subject to epileptic seizures while asleep. His bedroom was equipped with an audio and visual monitor that could alert the staff so that the staff could make sure during a seizure that Tommy didn’t roll over face-down — a position that can prevent breathing.
Maureen Shea (right) talks with COFAR Vice President Anna Eves prior to a hearing by the MDDC last week on legislative proposals this session concerning the developmentally disabled. Shea is pushing for a bill that would ensure that residential facility staff are adequately trained to use medical equipment needed by the facility residents.
Maureen and her daughters were 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 provider managers had repeatedly assured Maureen that the staff were being trained and were knowledgeable about Tommy’s medical equipment.
On June 8, 2017, Maureen received a call from the residential supervisor to come to the residence immediately. When she arrived, the police were there. They told her that Tommy had died and that he had been found face-down on his bed. The batteries in the monitor were later found to be dead.
Last week, Maureen recounted her experience at a hearing held by the Massachusetts Developmental Disabilities Council (MDDC) on bills concerning persons with developmental disabilities. The bills have been filed in the new 2019-2020 legislative session.
Maureen and her family have proposed one of those bills. It 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 and acknowledge the full requirements of the hospital discharge plan regarding any life support or other medical equipment. The medical professional must then advise the residential staff about those requirements.
That bill (SD 1176), which was filed by Senator Patrick O’Connor, Maureen’s state senator, is one of several legislative priorities for COFAR as well. At the MDDC hearing, we presented those priority bills, including a measure to make information about care in the DDS group home system more available to the public. We’ll have more information on those bills in our next post.
Staff was required to check monitor
As of early June 2017, Tommy had spent two weeks in a hospital for treatment of chronic vomiting due to migraines. Maureen was nervous about his return to his apartment because he had had four epileptic seizures in his sleep during the year and a half he had been living there.
Tommy’s Individual Support Plan (ISP)stated in a number of places that staff would check his monitor every day, Maureen said. She and her daughters waited 11 months for the results of the autopsy, which concluded that Tommy had died of cardiac arrest with epilepsy as a contributory cause.
Maureen said that prior to Tommy’s death, she had to enlist the Disability Law Center to represent her in an effort to force the program staff provider to agree to provide a van for Tommy’s transportation with a non-smoking driver. He had life-threatening asthma.
Tommy’s case recalls that of Yianni Baglaneas
Unfortunately, the apparent failure of the group home staff in Tommy’s case to check his seizure monitor recalls the case of Yianni Baglaneas, the son of Anna Eves, now COFAR’s vice president. Yianni nearly died in April 2017 after aspirating on a piece of cake in a group home in Peabody.
An investigation by the Department of Developmental Services found that the staff of Yianni’s group home had failed to to ensure that he regularly used a portable breathing mask at night called a CPAP (continuous positive airway pressure) machine. Based on the input of a medical expert, the report concluded that the failure to use the machine was the cause of the aspiration that led to Yianni’s near-fatal respiratory failure.
Family members all-too-frequently find that they must take the lead in trying to ensure that their loved ones are safe and well cared for in the system; but when providers and the Department itself aren’t willing or able to match that diligence, the outcomes are too often tragic.
We hope the Legislature’s Children, Families, and Persons with Disabilities Committee will act favorably on Maureen’s bill and ensure that it moves toward passage. The Committee also needs to continue its investigation of the DDS system, which was begun a year ago, and which does not appear up to now to have made much progress.
Ultimately, DDS needs to cooperate fully with the legislative investigation and show it is committed to fixing the system. Passage of Maureen’s bill is one of many steps that need to be taken by the Legislature in the meantime.
COFAR blog 
I need to get in touch with Maureen Shea. At 3:00pm on April 19th this year I walked into my daughters group home that she just move in 9 days earlier when she turned 22. I found her in bed not breathing as the house manager was standing over her giving her her 3:30 med not seeing anything wrong. I screamed at her garbed my daughter ran out of the home with her and called 911. She was in Boston’s Children’s Hospital for 27 days, the first two weeks on total life support. All because that would not listen to me on how to feed her. Please contact me.
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Michael, I’ll pass the message on to Maureen.
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